Research - DRHS:

• Health Conditions with a Thermoregulation or Temperature Sensitivity Factor
• Link to Air Conditioning/Heating supports

1. Thermoregulation and heat loss
2. TAT advices - Analysis of previous TAT advices relating to AC.
3. Link to disability - Analysis of types of health conditions that have a thermoregulatory or temperature sensitivity factor. o Any link to AC/heating being an effective preventative or treatment measure. o Evidence as to when the need for AC/heating as a support would be considered to be related to the disability (and which ones).
4. Value for money - Costs of the AC if considered for funding, and power usage, given we may be up for ancillary costs. |.e. Split systems versus portables. Also look at AC system life expectancy.
5. Other Options - Evidence as to whether AC would be considered first option to address need i.e. other AT supports which may address need such as cooling vests etc.
6. AC usage - Evidence as to usage of AC in different cities i.e. how may be considered usual daily living expense (have attached previous email info about this).

Date 25/10/19 Requester TAT Research Team Researcher Aanika@t=Ps & Craig =P

Contents

• Related TAB Research … 4
• Thermoregulation in Humans … 4
• Types of heat loss … 4
• Radiation … 5
• Conduction … 5
• Convection … 5
• Evaporation of water … 5
• Passive and Active Cooling … 5
• Analysis of Air Conditioning related TAT Advices … 6
• Recommendations not to fund … 6
• Recommendations to fund … 6
• Funding of Air conditioning in public housing … 6
• Disability Types and Health Conditions with Thermoregulation Control Factor … 8
• Overview … 8
• Disability types / health conditions with thermoregulatory factor identified: … 8
• Spinal Cord injury (SCI) / Tetraplegia / Quadriplegia … 8
• Multiple Sclerosis … 9
• Epidermolysis Bullosa (EB) … 11
• Epilepsy – febrile seizures … 12
• Dravet Syndrome … 13
• Parkinson’s disease … 13
• Fibromyalgia … 15
• Muscular Dystrophy … 16
• Scleroderma … 18
• Systemic Lupus Erythematosus (SLE) … 19
• Motor Neurone Disease … 20
• Post-Polio syndrome/Poliomyelitis … 21
• Lymphoedema (>Grade 1) … 22
• Familial disautonomia (a genetic disorder affecting individuals’ automatic (involuntary) bodily responses … 22
• Complex Regional Pain Syndrome … 23
• Stroke / Acquired Brain Injury … 24
• ASD … 25
• Cerebral Palsy. … 25

ndis

• Fanconi Anemia…26
• Spina Bifida…27
• Air Conditioning…28
• Types of air conditioning systems…28
• Refrigerative Air Conditioning…28
• Evaporative Air Conditioning…29
• Components in determining air conditioning selection…29
  • Strength and Capacity…29
  • Strength/Type per room size…30
  • Average cost of air conditioners per kilowatt capacity…30
  • Energy Costs…30
  • Energy Ratings…31
• Selection…31
• Cost and availability of Cooling Garments…32
• Literature Review - Cooling Garments…32
  • Cooling garments for MS…32
• Air conditioning usage across Australia…33
• Air conditioning* - Number and percentage of homes: 2005-2017…33
• Conclusion…35
• Recommendations…35
• Appendix A…36
  • Table 1: Breakdown of summary of TAT advices…36
  • Table 2: Summary of the advices…37
• Appendix B— Literature Review - Cooling Garments…42

Note: Separate research into the Commonwealth/state/territory power subsidy schemes for medical equipment and heating/cooling has also been collated, which links into air conditioning running costs.

Note: where full journal articles were not accessible, abstract information has been used.

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Thermoregulation in Humans

Humans are usually in a thermal steady state with respect to their surroundings. As endotherms, humans control their body temperatures. Heat generated by metabolic processes is lost to the environment though several mechanisms: radiation, conduction, convection, and evaporation. Unless the organism has more heat than can be eliminated by radiation and convection, evaporation (through perspiration) is not required and conduction is negligible.

• Normothermia - 36.5–37.5 °C
• Hypothermia - <35.0 °C
• Hyperthermia - >37.5 or 38.3 °C
• Fever - >37.5 or 38.3 °C
• Hyperpyrexia - >40.0 or 41.0 °C

A publication from 2014 in the Handbook of Clinical Neurology states that normally in the human body heat is dissipated by means of a thermoregulatory system.

“Disorders resulting from abnormally high or low body temperature result in neurologic dysfunction and pose a threat to life. In response to thermal stress, maintenance of normal body temperature is primarily maintained by convection and evaporation. Hyperthermia results from abnormal temperature regulation, leading to extremely elevated body temperature while fever results from a normal thermoregulatory mechanism operating at a higher set point. The former leads to specific clinical syndromes with inability of the thermoregulatory mechanism to maintain a constant body temperature. Heat related illness encompasses heat rash, heat cramps, heat exhaustion and heat stroke, in order of severity. In addition, drugs can induce hyperthermia and produce one of several specific clinical syndromes. Hypothermia is the reduction of body temperature to levels below 35°C from environmental exposure, metabolic disorders, or therapeutic intervention. Management of disorders of body temperature should be carried out decisively and expeditiously, in order to avoid secondary neurologic injury.”’

Types of heat loss

Heat loss (external heat flow) can occur via four pathways: radiation, convection, conduction and evaporation of water.

1. Dr Physics, ‘Heat transfer and the human body’, https://www.drphysics.com/convection/convection.html, accessed 12 October 2019.
2. Gomez, CR, ‘Disorders of body temperature’, Handbook of Clinical Neurology, Vol.120, 2014, pp. 947-957, https://www.sciencedirect.com/science/article/pii/B9780702040870000620?via%3Dihub, accessed 14 October 2019.
3. Szakacs, J, ‘Disorders of Thermoregulation’, [presentation], http://web.med.u-szeged.hu/patph/Thermoregulation, accessed 10 October 2019.

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Radiation

• Infrared radiation is the heat transfer between the body and nearby human beings or objects with lower temperature. As long as air temperature is less than body temperature, 65% of the body’s heat is lost by radiation.
• Human bodies will radiate heat into the environment in order to lose it.

Conduction

• Conduction is the transfer of heat to the surrounding, cooler environment via direct physical contact. It accounts for 2% of the body’s heat lost.
• Cooling vests are an example of conduction as the heat moves into the cooler object.

Convection

• When the surrounding air is warmed up by the skin, it is replaced by a cooler layer. Convection and conduction are enhanced by a breeze or by a cooler fluid medium. It is influenced by the blood circulation of the skin. It accounts for 10% of the body’s heat loss.
• Air conditioning is an example of convection.

Evaporation of water

• During heavy exertion or at high surrounding temperature (>36 oC) heat dissipation occurs entirely by evaporation Influenced by: blood circulation, humidity and temperature of the air, wind. When the humidity of the air (e.g. tropical rainforest) increases, heat loss through sweating decreases considerably or cease completely
  • Perspiratio insensibilis: through the skin and the airways ~1 l/day
  • Perspiratio sensibilis: via the activated sweat glands ~10 l/day
• For example, evaporation of sweat (water to gas).

Passive and Active Cooling

Passive Cooling is probably the most widely used type of cooling. It is called passive, as it does not rely on a power source to cool, but rather cools through the use of ice packs or gel. Passive cooling is generally inexpensive and portable, but has the disadvantage of limited duration of cooling, as the devices themselves require re-cooling every two to four hours. They also can be heavy. Active Cooling is a somewhat more “high tech” approach to cooling. Rather than achieving cooling through ice packs or gel packs, active cooling uses a motorized system to circulate cold water around the body*.

DiCarrado, S & Karpatkin, H, ’ Active and passive cooling garment options for persons with MS’, Multiple Sclerosis Foundation, 2016, https://msfocus.org/Magazine/Magazine-Items/Posted/Be-Cool-with-Active-and-Passive-Cooling-Garments-O.aspx, accessed 10 October 1029.

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Analysis of Air Conditioning related TAT Advices

TAT Advices from 22/05/17 to 12/09/19 loaded onto HPRM were analysed for key issues and themes which might be supportive for a delegate to make an informed R&N decision, taking into account the link with the participant’s disability and thermoregulation.

Recommendations not to fund

Of the 17 advices 15 were recommended to not fund. It appears these were based on:

• Insufficient evidence that air-conditioning of the participant’s home is value for money relative to the benefits achieved and the cost of alternative supports.
• There is no evidence that it will improve the life-stage outcomes for the participant (rule 3.1b) or reduce the need for other types of NDIS funded supports now or in the future (rule 3.1f).
• Air-conditioning or heating is the responsibility of any home owner/ tenant to provide for comfort during hot temperatures.
• The supply and installation of an air-conditioning unit is considered a day-to-day living cost and the responsibility of the home owner to fund.

Recommendations to fund

Of the 17 advices only two recommended funding. Both advices related to a thermoregulation issue with the participant being at risk of Autonomic Dysreflexia. Both participants have Spinal Cord Injury.

The recommendations were based on the link between the participant’s disability (Spinal Cord Injury) and thermoregulatory dysfunction.

• Advice: 2018 8130 / NED19/185598 was not declined as there was a link between the participant’s disability and thermoregulatory dysfunction: Further enquiry from Advisor on 26/09/19 - “My advice in 2018 8130 was informed by the clear link between the participant’s disability (high level SCI, above T6) and thermoregulatory dysfunction/AD. The research referenced in the advice links both poor functional outcomes as well as risk of life threatening health complications to thermoregulatory dysfunction and AD. There was also evidence of all other R&N criteria being met. In particular, there was evidence that this participant would not otherwise have funded a/c in his living area and that there was not a day-to-day cost of living component, as there can frequently be with a/c advices”.
• Advice: 2019 1164 / NED19/185733 was not declined as there was a link between the participant’s disability and thermoregulatory dysfunction: Further enquiry from Advisor on 26/09/19 - “… this participant also experiences autonomic dysreflexia and thermoregulatory dysfunction as a result of high level SCI. We have evidence from her treating medical practitioner of this, referenced in the advice. Please note that this is a second advice in relation to air con for this participant, there were additional documents referenced in the original advice, referred to in this one”.

A full breakdown of the TAT advices that were analysed can be found in Appendix A.

Funding of Air conditioning in public housing

In 2018 the TAT received a request to approve funding for an air-conditioner for a child with cerebral palsy and uncontrolled seizures living in QLD public housing (20185188). The key question was whether air conditioning was more appropriately funded by the QLD Department of Housing or the NDIS.

A position was put forward to clarify that the NDIS is not responsible for the funding of air conditioning in publicly provided housing as this:

• Does not meet section 34(1)(f) f the NDIS Act.

• Overlooks the obligations of the housing authority under the Disability Discrimination Act 1992 to make reasonable adjustments to housing for people with disability related needs.

  o The two largest QLD state government authorities have established policy which accepts their responsibility to provide air conditioning in public housing where medical or disability related need is demonstrated

This position separates considerations for the possible NDIS funding of air conditioning in private homes, from funding considerations in public housing.

ndis

Disability Types and Health Conditions with Thermoregulation Control Factor

Overview

There are numerous health conditions that have a thermoregulatory (inability to regulate body temperature) or heat or cold sensitivity factor. The list of health conditions below have been identified and collated from two sources:

• TAT advices; and
• Australian heating and cooling energy subsidy schemes.

Commented [HA6]: Do not include data from advices, but can use them to point to other pieces of evidence.

There may be other health conditions that require heating or cooling supports,

The health conditions listed in the heating and cooling energy subsidy schemes clearly have a thermoregulation link. Of the TAT advice health conditions, Spina Bifida was the only one where there was no readily available evidence to support the link between Spina Bifida and an inability to regulate heat.

Note: While every attempt to locate contemporary and correct information was made, this information collated below may not be medically accurate.

Commented [HA7]: Emphasise: not an exhaustive list. Would be useful to describe which types of impairment in body function (ICF) can contribute to thermoregulation problems.

Disability types / health conditions with [-=thermoregulatory factor identified:

• Multiple Sclerosis * Parkinson’s Disease
• Junctional * Fibromyalgia Epidermolysis * Muscular Dystrophy Bullous * Systemic Lupus Erythematosus (SLE)
• Spina Bifida * Motor Neurone Disease
• Stroke * Lymphoedema (>Grade 1)
• ASD * Post-Polio syndrome/Poliomyelitis
• ABI * Tetraplegia (quadriplegia)
• Fanconi Anemia * Familial disautonomia (a genetic disorder affecting individuals’ automatic involuntary bodily responses
• Cerebral Palsy * Scleroderma

• Complex Regional Pain Syndrome |

Some of these conditions only have an associated need for heating or cooling supports to maintain body temperature, while others have thermoregulation issues requiring supports for both.

Spinal Cord injury (SCI) / Tetraplegia / Quadriplegia

Cooling

Page 28 of 335

The two TAT advices where funding for air conditioning was recommended were both related to the participant having spinal cord injury above T6, and at risk of autonomic dysreflexia (AD). Autonomic dysreflexia is a condition of uncontrolled sympathetic response secondary to a precipitant, which generally occurs in patients with injury to the spinal cord at levels of T6 and above.

According to Health Queensland: “People with SCI at the level of T6 and above can lack the control to respond appropriately to environmental changes in temperature. As a result, they may experience high or low body temperatures and this can be of particular concern in the summer season. Most people with this level of injury will require air conditioning in their home, car and workplace.

NSW Health also states that: “Autonomic dysreflexia in a person with SCI can present in a variety of ways and vary in intensity from mild discomfort to a severe, life threatening medical emergency. Typically, the patient will complain of a pounding headache with flushing and profuse sweating above the level of spinal lesion, with or without other symptoms such as nasal congestion (stuffiness), blurred vision, shortness of breath and/or anxiety”.

In 2017 a controlled study was undertaken to compare the effects of heat exposure on cognition in persons with tetraplegia compared to a group of able-bodied controls. “To determine the effects of heat exposure on core body temperature (Tcore) and cognitive performance in persons with tetraplegia, 8 individuals with chronic tetraplegia (C3-C7, American Spinal Cord Injury Association Impairment Scale A-B) and 9 able-bodied controls were acclimated to 27°C at baseline (BL) before being exposed to 35°C for up to 120 min (Heat Challenge).”

The study confirmed that:

• “Dysfunctional thermoregulatory mechanisms in the tetraplegic group allowed Tcore to rise from subnormal levels to normothermia (normal body temperature) during heat exposure. Normothermia was associated with improvements in attention, working memory, and executive function”.

Research clearly indicates that people with spinal cord injury above T6 have difficulties with thermoregulation and are particularly at risk of life threatening complications from overheating.

Multiple Sclerosis

Heating and Cooling

In 2010, the Journal of Applied Physiology published a review into the impact of thermoregulation as a symptom for people with multiple sclerosis. The review found that:

3 J. Bycroft et al., “Autonomic dysreflexia: a medical emergency”, Postgraduate Medical Journal, 2005, pp. 232-235. https://pmj.bmj.com/content/81/954/232, accessed 10 October 2019.

Queensland Government, Queensland Health, “Spinal Outreach Team Newsletter”, Issue 21, Jan 2018.

? Middleton, J et al., ‘Treatment of Autonomic Dysreflexia for Adults & Adolescents with Spinal Cord Injuries’, NSW Agency for Clinical Innovation, 2013., accessed 14 October 2019.

® Handrakis, JP et al., ‘Effect of Heat Exposure on Cognition in persons with Tetraplegia’, Journal of Neurotrauma, vol. 15, no. 34, 2017, pp. 3372-3380,, accessed 15 October 2019.

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• Multiple sclerosis (MS) is a progressive neurological disorder that disrupts axonal myelin in the central nervous system. Demyelination produces alterations in saltatory conduction, slowed conduction velocity, and a predisposition to conduction block.
• An estimated 60–80% of MS patients experience temporary worsening of clinical signs and neurological symptoms with heat exposure. Additionally, MS may produce impaired neural control of autonomic and endocrine functions.
• This review focuses on five main themes regarding the current understanding of thermoregulatory dysfunction in MS: 1) heat sensitivity; 2) central regulation of body temperature; 3) thermoregulatory effector responses; 4) heat-induced fatigue; and 5) countermeasures to improve or maintain function during thermal stress.
• Heat sensitivity in MS is related to the detrimental effects of increased temperature on action potential propagation in demyelinated axons, resulting in conduction slowing and/or block, which can be quantitatively characterized using precise measurements of ocular movements.
• MS lesions can also occur in areas of the brain responsible for the control and regulation of body temperature and thermoregulatory effector responses, resulting in impaired neural control of sudomotor pathways or neural-induced changes in eccrine sweat glands, as evidenced by observations of reduced sweating responses in MS patients. Fatigue during thermal stress is common in MS and results in decreased motor function and increased symptomatology likely due to impairments in central conduction”. Regarding effective treatment, the review concluded that:
• “Although not comprehensive, some evidence exists concerning treatments (cooling, precooling, and pharmacological) for the MS patient to preserve function and decrease symptom worsening during heat stress”
• “Cooling techniques, including precooling, have been shown to be effective in minimizing the consequences of heat stress in MS patients. Advances in pharmacological therapies have demonstrated potential in limiting symptom worsening during heat exposure and warrant further investigation”*°. Multiple Sclerosis Australia acknowledge that people with MS commonly experience heat sensitivity and flare ups when hot. MS Australia recommends a variety of personal and environmental cooling strategies to reduce symptoms flare up. A key environmental strategy is to: “Keep your home cool - use a fan, air conditioner or evaporative cooler”. MS Australia also state that “sensitivity to cold is not as well-known as heat sensitivity, but both occur quite frequently in MS. Some people are sensitive to both heat and cold so the temperature needs to be just right for them to feel at their best”2?. Multiple Sclerosis Foundation discuss the different types of cooling options available and differentiate between active and passive cooling. MS Foundation advise that:
• “Almost all persons with multiple sclerosis suffer from increased sensitivity to heat, also known as thermosensitivity. An increase in heat will often result in a worsening of symptoms such as fatigue, visual loss, spasticity, weakness and pain. The increase in heat can be due to external or internal factors. Externally, an increase in heat can result from an increased

McKenzie AAT Case ruling

In 2019 a high profile NDIS / AAT case ruled in favour of funding the replacement and upgrading of an air-conditioning system in the participant’s home to assist with thermoregulation associated with their Multiple Sclerosis. To support the case, Dr Ollie Jay from the Faculty of Health Sciences, University of Sydney, provided a report titled ‘Air conditioning for people with multiple sclerosis —is it reasonable and necessary support under the NDIS?’

While the report was specific to the participant’s circumstances, the report found that broadly “Heat intolerance for people with MS is a phenomenon where individuals will experience a temporary worsening of their symptoms and a rapid onset of fatigue during exercise or with exposure to arm/hot environments. An intolerance to heat supposedly occurs when an individual has an increase in core temperature of 0.2 to 0.5c, irrespective of a person’s thermoregulatory needs. There is a strong argument supporting the efficacy of air conditioning use for reducing the severity and frequency of symptoms in heat sensitive MS people” (page 12 of report).

There is a quality research supporting the link between MS and thermoregulatory dysfunction and that many people with MS experience a worsening of symptoms when exposed to heat stressors.

Epidermolysis Bullosa (EB)

Heating and Cooling

• Epidermolysis Bullosa Simplex: The most common type, it first shows up in newborns. It mainly affects the palms of the hands and soles of the feet.

• Junctional epidermolysis bullosa: While it also first appears in babies, this is a more severe form that causes blistering in deep layers of the skin.

• Dystrophic epidermolysis bullosa: If you have this type, your skin doesn’t have collagen to hold it together, or the collagen you do have doesn’t work well. This means the layers of your skin don’t seal together like they should. Sometimes this type doesn’t show up until early childhood.

• Kindler syndrome: This is a mixed condition, since blisters appear across different skin layers. It can also cause patchy changes in your skin colouring when it’s exposed to the sun.

• Epidermolysis bullosa acquisita: This form causes blisters on your hands and feet as well as in mucous membranes like the mouth”

EB has no cure or treatment. WebMD recommends that at home care to prevent blisters and care for skin is the best approach. One of these recommendations is to “Keep cool. Keep your bath water no warmer than room temperature. Stay in air conditioning as much as you can and avoid heat and humidity”“.

Wounds International, have published ‘best practice guidelines for skin and wound care in epidermolysis bullosa’. The guidelines state that “wounds that have almost healed are particularly pruritic and scratching can lead to wound breakdown. Apart from skin breakdown, intense pruritus

22 DiCarrado, loc cit.

33 WebMD, ‘What is Epidermolysis Bullosa’, 2019’, https://www.webmd.com/skin-problems-and-treatments/epidermolysis-bullosa-what-is#1, accessed 10 October 2019. 4 Ibid.

Epilepsy – febrile seizures

Cooling

There are several scientific studies that have been conducted which support the link between some types of epilepsy and temperature induced seizures.

A study from 2017 examined heat-induced temperature dysregulation and seizures in Dravet Syndrome and epilepsy with febrile seizures (FS) plus (GEFS+). The study found that:

• It has been established that febrile seizures and its extended syndromes like generalized epilepsy with febrile seizures (FS) plus (GEFS+) and Dravet syndrome have been associated with mutations especially in SCN1A and GABRG2 genes. In patients, the onset of FS is likely due to the combined effect of temperature and inflammation in genetically vulnerable individuals because fever is often associated with infection… We demonstrated age-dependent dysregulated temperature control and that temperature elevation produced myoclonic jerks, generalized tonic clonic seizures (GTCSs) and heightened anxiety-like symptoms in Gabrg2+/Q390X mice. The study indicated that regardless of other inflammatory factors, brief heat alone increased brain excitability and induced multiple types of seizures in Gabrg2*/?9™ mice, suggesting that mutations like GABRG2 (Q390X) may alter brain thermal regulation and precipitate seizures during temperature elevations*®.

A study from 2012 conducted by the Department of Anatomy and Neurobiology at the University of California examined Drosophila (fruit fly used in genetic research) cellular mechanisms to mirror heat-induced seizures in human epilepsy*. Basically, through examining cellular sodium channel mutations common in people with genetic epilepsy with febrile seizures plus (GEFS+), the researchers were able to link this mutation to central nervous system dysfunction causing febrile seizures*®.

A small study conducted in 2017 of two children with ‘hot water epilepsy’. Reflex epilepsies represent a form of epilepsy in which unique modes of seizure precipitation are characterized by

15 Denyer J, Pillay E, Clapham J. Best practice guidelines for skin and wound care in epidermolysis bullosa. An International Consensus, Wounds International, 2017 http://www.debra-international.org/fileadmin/media_data/4_DEBRA_International/CPGs/Guidelines/International_Consensus_Best_Practice_Guidelines_Skin_and_Wound_Care_in_Epidermolysis_Bullosa.pdf, accessed 7 October 2019, p. 26.

16 Warner, TA et al., ‘Heat induced temperature dysregulation and seizures in Dravet Syndrome/GEFS+ Gabrg2+/Q390X mice’, Epilepsy research, vol. 134, 2017, pp.1-8, https://www.sciencedirect.com/science/article/abs/pii/S0920121117302620, accessed 10 October 2019.

17 Sun, L et al., ‘A knock-in model of human epilepsy in Drosophila reveals a novel cellular mechanism associated with heat-induced seizure’, Journal of Neuroscience, vol. 10, no. 32, 2012, pp. 14145-55, https://www.ncbi.nlm.nih.gov/pubmed/23055484, accessed 11 October 2019.

18 Ibid.

Dravet Syndrome

Cooling

Dravet syndrome (DS) is a severe form of epilepsy characterized by frequent, prolonged seizures often triggered by high body temperature (hyperthermia), developmental delay, speech impairment, ataxia, hypotonia, sleep disturbances, and other health problems. Hyperthermia, or overheating, is a common seizure trigger in Dravet Syndrome, and patients display heightened sensitivity to warm baths, fevers, exertion, and other forms of temperature elevation.

The Epilepsy Queensland website notes that: “Seizures in Dravet syndrome can be increased by heat (hot days, hot showers or exercise) and in some (not all) children by visual stimulation (flickering lights or patterns).”

People with epilepsy or Dravet syndrome may experience heat induced seizures and are at risk in elevated temperatures.

Parkinson’s disease

Cooling

Mayo clinic defines Parkinson’s disease as “a progressive neurological disease that affects movement. Symptoms include tremors, slowed movement (bradykinesia), rigid muscles, impaired posture and balance, loss of automatic movement, speech and writing changes. Other symptoms can include cognitive difficulties, emotional changes, swallowing difficulties and eating problems, sleep problems and disorders, bladder issues and constipation. Also blood pressure changes, smell dysfunction, fatigue, pain and sexual dysfunction.”

There are a variety of publications examining the link between thermoregulation and Parkinson’s disease:

Mayo states that

“Autonomic dysfunction in Parkinson’s disease encompasses thermoregulatory symptoms. Research has demonstrated ‘deficits of sweating and vasomotor tone which often correlate with the severity of other autonomic deficits. Tests of thermoregulatory function can also be used to differentiate Parkinson disease from other neurodegenerative disorders. The pathophysiology of thermoregulatory dysfunction in Parkinson disease encompasses both central and peripheral mechanisms; involvement of the brainstem and hypothalamus with alpha-synuclein pathology is well recognised with increasing evidence of peripheral neuropathy in Parkinson disease that influences thermoregulation. Medications used to treat Parkinson’s disease also affect thermoregulatory symptoms.”

19 Appuvu, B et al., ‘Seizures Induced by Exiting Water: A Unique Form of Reflex Epilepsy’, Neurologist, vol. 22, no. 5, 2017, pp. 196-198, https://www.ncbi.nlm.nih.gov/pubmed/28859025, accessed 14 October 2019.

20 Ibid.

21 National Organization for Rare Disorders, ‘Dravet Syndrome’, 2018, https://rarediseases.org/rare-diseases/dravet-syndrome-spectrum/, accessed 11 October 2019.

22 Epilepsy Queensland, ‘Dravet syndrome’, 2013, https://www.epilepsyqueensland.com.au/dravet-syndrome, accessed 11 October 2019.

23 Mayo Clinic, ‘Parkinson’s disease’, 2019, https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055, accessed 11 October 2019.

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Thermoregulation in Parkinson’s Disease

Thermoregulation significantly affects the quality of life for patients and their caregivers, and can be severe and even life-threatening, such as in the parkinsonism-hyperpyrexia syndrome.

A journal publication from 2012 examining thermoregulatory dysfunction in Parkinson’s states that:

• Homeotherms, such as humans with Parkinson’s disease, must maintain core body temperature within a narrow range despite fluctuating environmental surroundings and endogenous heat production. A complex and highly integrated collection of autonomic, endocrine, and behavioral responses are involved in the maintenance of core temperature.

Dopaminergic innervation of the preoptic and anterior hypothalamus plays an important role in the central nervous system’s control of body temperature. Due to a combination of central dopamine deficiency and peripheral autonomic dysfunction, individuals with Parkinson’s disease may experience heat and/or cold intolerance and paroxysmal hyperhidrosis.

Sudomotor dysfunction in Parkinson’s disease can be documented using sympathetic skin response, quantitative sudomotor axon reflex, and thermoregulatory sweat tests.

A recent study from 2019 investigated the potential differences in the size and shape of the thalamus in Parkinson’s disease, and how morphology and functional connectivity relate to clinical variables. The data demonstrated:

• Parkinson’s disease is associated with increased functional connectivity between motor subdivisions of the thalamus and the supplementary motor area, as well as between prefrontal thalamic subdivisions and nuclei of the basal ganglia, anterior and dorsolateral prefrontal cortices, and the anterior and paracingulate gyri. These results suggest that Parkinson’s disease is associated with increased functional connectivity in subdivisions of the thalamus which may indicate alterations to basal ganglia-thalamocortical circuitry.

In 1991 a study was conducted into sweating and vasodilator responses in 22 people with Parkinson’s disease to evaluate thermoregulatory function:

• Sweating was evaluated using the colorimetric method (Minor’s method). Superficial vasodilation at the level of the face was assessed after oral intake of nitroglycerin by telethermography. Sweating and superficial vasodilation were reduced in parkinsonian patients compared with control subjects. Asymmetries in sweating and superficial vasodilator responses were observed between the left and right sides of the body, more apparent on the symptomatic side in hemiparkinsonism. No relationship was found between thermoregulation alterations and other clinical features of Parkinson’s disease.

In 2013 a study explored the relationship between symptoms of rapid eye movement sleep behavior disorder, thermoregulation, and sleep in Parkinson’s disease.

References:

• Coon, E & Low, PA. ‘Thermoregulation in Parkinson Disease’. Handbook of Clinical Neurology, 2018, Mayo Clinic. Link
• LeDoux, M. ‘Thermoregulatory Dysfunction in Parkinson’s Disease’. Current Clinical Neurology, 2012, pp.213-227.
• Owens-Walton, C et al. ‘Increased Functional Connectivity of Thalamic Subdivisions in Patients with Parkinson’s Disease’. PloS One, Vol. 4, No.14, 2019.
• De Marinis, M et al. ‘Alternations of Thermoregulation in Parkinson’s Disease’. Functional Neurology, vol.6 no.3, pp279-83, 1991.

Fibromyalgia

Heating

Fibromyalgia (FM) is a condition in which people experience symptoms that include widespread pain and tenderness in the body, often accompanied by fatigue and problems with memory and concentration.

FM affects two to five per cent of the population, mainly women, although men and adolescents can also develop the condition. It tends to develop during middle adulthood. The symptoms of FM can vary from mild to severe. The most common symptoms are:

• increased sensitivity to pain due to a decreased pain threshold
• increased responsiveness to sensory stimuli such as heat, cold, light, smell
• extreme fatigue (tiredness)
• problems with memory and concentration (fibro fog)
• problems with sleep.

A publication in a clinical pain journal from 2014 examined the overlap between thermoregulation and pain modulation in FM. The review summarises the literature describing commonalities between the regulation of pain and temperature that may contribute to the widespread pain of FM. The research found that:

• “Fibromyalgia syndrome is characterized by widespread pain that is exacerbated by cold and stress but relieved by warmth. We review the points along thermal and pain pathways where temperature may influence pain. We also present evidence addressing the possibility that brown adipose tissue activity is linked to the pain of FM given that cold initiates

28 Zhong, G, et al., ‘The Relationship between Thermoregulation and REM Sleep Behaviour Disorder in Parkinson’s Disease’, PLoS One, 2013, https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0072661 29 Ibid. 30 Better Health Channel, ‘Fibromyalgia’, 2017, https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/fibromyalgia, accessed 11 October 2019.

Thermogenesis and Fibromyalgia

Both FM (fibromyalgia) and thermoregulation are exquisitely sensitive to stress. Acute cold and stress increase heat generation via UCP1 activity in Brown Adipose Tissue (BAT), while chronically high sympathetic tone increases UCP1 synthesis, increasing BAT volume for adaptive thermogenesis against persistent stress. High sympathetic tone in FM patients aggravates pain but lowers their temperature compared to healthy individuals, indicating either insufficient heat production or enhanced heat loss, the latter being unlikely as sympathetic tone tends to curb heat loss. Exercise may relieve symptoms of FM and improve thermoregulation by gradually decreasing adrenergic activity and providing an alternate source of body heat.

As thermogenesis (heat production) and associated pain are common concerns for people with FM, requests for heating via split system may be more common than air conditioning.

A 2015 study investigated ANS dysfunctions in FM patients through cold-water tests. 23 female FM patients and 15 healthy controls were recruited. FM patients filled out PainDETECT, ACR criteria of FM, and POMS; controls only POMS. Participants immersed forearms in 1°C water for up to 120 seconds. Thermographic cameras recorded skin temperature and recuperation.

The research concluded that:

• The two groups differed significantly regarding central body temperature, forearm thermography, and peripheral (forearm)-central (ear) temperature ratio. FM patients showed less tolerance to cold water than controls. Total temperature decrease, cool-down rate, and recuperation between 0 and 20 minutes after withdrawal showed significant intergroup differences; thermal recovery followed similar patterns in both groups.
• Peculiar ANS baseline characteristics are seen in FM patients, with reduced ability to sustain low temperatures limiting extrapolation of inter-group analysis. Their thermal-adaptive responses were found different compared to controls.

People with fibromyalgia commonly experience increased pain brought on by exposure to cold temperatures and an apparent autonomic dysfunction in regulating thermal adaptive processes.

Muscular Dystrophy

Heating and cooling

Muscular dystrophy is a group of inherited neuromuscular conditions causing weakness and wasting of muscles, which worsen over time and are not reversible.

31 Larson, AA et al., ‘Review of overlap between thermoregulation and pain modulation in fibromyalgia’, Clinical Journal Pain, vol. 30, no. 6, 2014, pp.544-555, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3864605/, accessed 15 October 2019.

32 Ibid.

FOI 24/25-0247

There are more than 30 different types of muscular dystrophy. Most are caused by changes to genes involved in providing strength to the muscle structure*.

Many of the conditions that fall under ‘muscular dystrophy’ list impaired pain and temperature sensation as a common symptom™.

Some people with Muscular dystrophy experience difficulty in relaxing muscles in cold temperatures”.

Muscular Dystrophy UK have published an Adaptation Manual: for children and adults with muscle wasting conditions which is endorsed by the College of Occupational Therapists UK. The manual acknowledges that:

• For people with muscle wasting conditions, and their inevitable lack of mobility, it is essential to provide higher than average levels of heating. This is especially important for the bedroom, bathroom and living room areas.

• Heating is particularly important in the bathroom, especially where it has more than one external wall. Without adequate heating, it is likely the bathroom will not be used.

• Most children with muscle-wasting conditions feel the cold from a very young age. As their conditions progress and their mobility decreases, the problem becomes more severe. This is common to people of all ages with similar muscle-wasting conditions.

• When planning an adaptation that requires an extension, it’s important to ensure the boiler has the capacity to heat the new rooms and contain sufficient water.

• A wall-mounted heater should be installed in the bathroom to provide supplementary heating in the winter and in the summer when the central heating is not required.

• Where there is medical need, it may be possible to grant-fund the installation of a new central heating system, or the extension of an existing one, if necessary with an upgraded boiler. The grant may not cover the cost of installing radiators in rooms that are either inaccessible to the disabled person or not used by them.

• It is also important to stress that the type of heating system chosen must be instantly controllable and therefore capable of being boosted when necessary and able to provide a constant temperature and be suitable to be left on, when the disabled person is out of the house.

• Storage heaters are not adequate because the temperature must remain constant over any 24-hour period. Also, individual radiant electric heaters are not suitable, because many people would hesitate to leave them unattended. In no circumstances should the disabled person return to an unheated house.

• Consider carefully the type of control and its location so that it can be operated safely and easily by the user. With the advances in technology, there is now the potential to operate

*Better Health Channel, ‘Muscular Dystrophy’, 2019, https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/muscular-dystrophy, accessed 17 October 2019.

** Muscular Dystrophy Foundation Australia, ‘Facts about Myotonic Muscular Dystrophy’, 2012, http://mdaustralia.org.au/wp-content/uploads/sites/4/2009/02/List-of-Neuromuscular-Conditions.pdf, accessed 17 October 2019.

35 Muscular Dystrophy South Australia, ‘List of Neuromuscular Conditions’, 2009, http://mdaustralia.org.au/wp-content/uploads/2012/07/013_myotonic-dystrophy-2012.pdf, accessed 17 October 2019.

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Scleroderma

Heating

Scleroderma as an autoimmune condition. Arthritis Australia writes that

• “Scleroderma affects the connective tissues of the body (tissues that hold together joints, muscles, blood vessels and internal organs). The connective tissues of people with scleroderma have too much of a protein called collagen. Collagen is important to give connective tissue its strength, but excess collagen causes hardening and tightening of the affected area. There are two major types of scleroderma:
  • Localised scleroderma (sometimes called ‘morphea’). This form of scleroderma affects only the skin and sometimes the tissues beneath it (for example, muscle). This can lead to stiffness and difficulties moving the joints in the affected areas.
  • Systemic sclerosis. This form affects the connective tissue throughout the body, including blood vessels, joints, the digestive system (oesophagus, stomach and bowel), and occasionally the lungs, heart, kidneys and muscles.“’

A common symptom of Scleroderma is Raynaud’s phenomenon where “The fingers or toes turn white, then blue in the cold, and then red as blood flow returns. This is caused by narrowing of the blood vessels, in response to cold weather. It is possible to have Raynaud’s without having scleroderma, but most people with scleroderma will have symptoms of Raynaud’s at some time and it is often one of the first symptoms to appear”’. Arthritis Australia recommend the best way to manage Raynaud’s phenomenon is to “Minimise exposure to cold and sudden temperature changes. Make sure your whole body is kept warm and protect your hands and feet with gloves and warm socks. Avoid cigarette smoke”.

Better Health Channel Victoria write that Raynaud’s phenomenon is the short-term interruption of blood flow to the extremities, such as the fingers and toes and suggest the best way to treat Raynaud’s is to control environmental factors and avoid prolonged exposure to cold weather.

Mayo Clinic recommend the best way to prevent Raynaud’s attacks are to:

• “Bundle up outdoors. When it’s cold, don a hat, scarf, socks and boots, and two layers of mittens or gloves before you go outside. Wear a coat with snug cuffs to go around your mittens or gloves, to prevent cold air from reaching your hands.

36 Muscular Dystrophy UK, ‘Adaptations Manual: for children and adults with muscle wasting conditions’, second edition, 2017, http://www.musculardystrophyuk.org/wp-content/uploads/2017/04/INF23-A—Adapt_web.pdf, accessed 11 October 2019.

37 Arthritis Australia, ‘Scleroderma’, 2017, https://arthritisaustralia.com.au/types-of-arthritis/scleroderma, accessed 17 October 2019.

38 Ibid.

39 Ibid.

40 Better Health Channel, ‘Raynaud’s phenomenon’, 2019, https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/raynauds-phenomenon, accessed 17 October 2019.

Systemic Lupus Erythematosus (SLE)

Heating and Humidifiers

Systemic lupus erythematosus (SLE), otherwise known as lupus, is a chronic condition that results from a malfunctioning immune system. The immune system is designed to identify foreign bodies (such as bacteria and viruses) and attack them to keep us healthy. However in the case of lupus, your immune system mistakenly attacks healthy tissue, causing inflammation in parts of the body such as the skin, joints, kidneys, heart and lungs.

Diagnosis of SLE can be challenging, but is based on demonstration of a number of clinical manifestations as well as immunological abnormalities. Referral to a rheumatologist is strongly recommended to assist with the diagnosis and make treatment recommendations. Management of SLE depends on the level of disease activity and can include general measures, NSAIDs and steroids. Immunosuppression is often required and specific targeted therapy is on the horizon.

The goal of treatment is remission or control of disease activity and prevention of (further) organ damage with the minimum possible dose of glucocorticoids. Treatment with the drugs available can clearly improve the short- and long-term prognosis of SLE. A modern treatment strategy should comprise not only preventive measures but also the treatment of comorbidities (e.g., infections and cardiovascular events).

Approximately one third of people with Lupus experience Raynaud’s phenomenon (as discussed in Scleroderma). Another condition that commonly overlaps with Lupus is Sjorgen’s syndrome, which “affects the body’s ability to produce moisture in the glands of the eyes, nose, mouth, and vagina”. People with Sjorgen’s syndrome are recommended to keep a high-humidity work and home environment to control moisture.

41 Mayo Clinic, ‘Raynaud’s disease’, 2019, https://www.mayoclinic.org/diseases-conditions/raynauds-disease/symptoms-causes/syc-20363571, accessed 17 October 2019.

42 Better Health Channel, ‘Lupus’, 2019, https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/lupus, accessed 17 October 2019.

43 Apostolopoulos, D & Yik-Bun Hoi, A, ‘Systemic lupus erythematosus’, Royal Australian College of General Practitioners’, 2013, https://www.racgp.org.au/afp/2013/october/systemic-lupus-erythmatosus, accessed 11 October 2019.

44 Kuhn, A et al., ‘The Diagnosis and Treatment of Systemic Lupus Erythermatosus’, Deutches Arzteblatt, vol 112, no. 25, 2015, pp-423-432, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4558874.

45 Lupus Foundation of America, ‘About Raynaud’s Disease’, 2015, https://www.lupus.org/resources/about-raynauds-disease, accessed 16 October 2019.

** Ibid.

Motor Neurone Disease

Heating and Cooling

Motor neurone disease (MND) is also called amyotrophic lateral sclerosis (ALS) and Lou Gehrig’s disease. It is a rapidly progressing, neurological disease. MND often begins with weakness of the muscles in the hands, feet or voice, although it can start in different areas of the body and progress in different patterns and at different rates. People with MND become increasingly disabled. Life expectancy after diagnosis is one to five years, with 10 per cent of people with MND living 10 years or more. The needs of people with MND are complex and vary from person to person®.

Better Health Channel (Vic) writes that common symptoms of MND are insomnia, breathlessness, coldness and swelling, which all can be assisted by controlling the environmental temperature*’.

A journal publication from 2018 reviewed the evidence linking Amyotrophic lateral sclerosis (ALS) and thermoregulation. This review concluded that “while ALS is not classically associated with defective thermoregulatory function, its progression severely affects key brain regions controlling body temperature and impacts multiple sensors and effectors of this homeostatic function. Furthermore, animal models of ALS display disturbed thermoregulation as a consequence of disrupted energy homeostasis. All these lines of indirect evidence call for studies directly addressing the body temperature regulatory system, both as a potential biomarker and as a possible modifier of disease progression in ALS*°.

Another publication from 2002 measured the sweat loss of ALS patients with MND against a control group and found that MND is linked to Sudomotor dysfunction (sudomotor is anything that stimulated the sweat glands). The study found that Autonomic dysregulation is part of the complex degenerative process in amyotrophic lateral sclerosis (ALS). In early ALS, patients had significantly higher skin water loss than control subjects over the thenar (rounded fleshy part of hand at base of

47 Appenzeler, S, ‘Prevalence of thyroid dysfunction in systemic lupus erythematosus’, Journal of Clinical Rheumatology, vol. 15 no. 3, 2009, pp.117-19, https://www.ncbi.nlm.nih.gov/pubmed/19300286 48 Better Health Channel, ‘Motor Neurone Disease’, 2018, https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/motor-neurone-disease, accessed 11 October 2019. 49 Ibid. 5° Dupius, L et al., ‘Thermoregulation in amyotrophic lateral sclerosis’, Handbook of Clinical Neurology, vol. 157, 2018, pp. 749-760, https://www.ncbi.nlm.nih.gov/pubmed/30459038, accessed 17 October 2019.

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Post-Polio syndrome/Poliomyelitis

Heating

The National Institute of Neurological Disorders and Stroke define Post-polio syndrome (PPS) as a

• “Condition that can strike polio survivors decades after their recovery from poliomyelitis. Polio is an acute viral disease that destroys motor neurons. Many people who are affected early in life recover and develop new symptoms many decades later. After acute polio, the surviving motor neurons expand the amount of muscle that each controls. PPS and Post-Polio Muscular Atrophy (PPMA) are thought to occur when the surviving motor neurons are lost in the aging process or through injury or illness. Many scientists believe PPS is latent weakness among muscles previously affected by poliomyelitis and not a new MND”.

• “Symptoms include fatigue, slowly progressive muscle weakness, muscle atrophy, fasciculations, cold intolerance, and muscle and joint pain. These symptoms appear most often among muscle groups affected by the initial disease, and may consist of difficulty breathing, swallowing, or sleeping. Other symptoms of PPS may be caused by skeletal deformities such as long-standing scoliosis that led to chronic changes in the biomechanics of the joints and spine. Symptoms are more frequent among older people and those individuals most severely affected by the earlier disease. Some individuals experience only minor symptoms, while others develop muscle atrophy that may be mistaken for ALS. PPS is not usually life-threatening. Doctors estimate that 25 to 50 percent of survivors of paralytic poliomyelitis usually develop PPS”.

A study from 2012 examining the effects of a traditional Chinese therapy practice in post-polio syndrome patients with cold intolerance cites another Brazilian study from 2006 (could not access 2006 study). The 2006 study found that:

• “167 patients who had previously been diagnosed with paralytic poliomyelitis and subsequently with PPS highlighted a Cl frequency of 69.8%”. The study found that “The affected extremities are often unseasonably cold due to involvement of the sympathetic nerve cells, leading to vasoconstriction”.

51 Beck, M et al., ‘Progressive sudomotor dysfunction in amyotrophic lateral sclerosis’, Journal of Neurology, Neurosurgery and Psychiatry, vol. 73, 2002, pp.68-70, https://www.ncbi.nlm.nih.gov/pubmed/12082050, accessed 15 October 2019.

52 National Institute of Neurological Disorders and Stroke, ‘Motor Neurone Diseases Fact Sheet’, 2019, https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Motor-Neuron-Diseases-Fact-Sheet, accessed 15 October 2019.

53 Quadros, AAJ & Oliveira ASB, Sindrome pós-poliomielite (SPP): avaliação de 167 pacientes, 2006, in Ramos, PE, ‘Effects of Daoyin Qigong in postpolio syndrome patients with cold intolerance’, Arquivos de Neuro-Psiquiatria, vol.70 no.9, Sept. 2012, http://dx.doi.org/10.1590/S0004-282X2012000900006, accessed 16 October 2019.

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Lymphoedema (>Grade 1)

Cooling

Lymphoedema is listed as a qualifying condition for three of the state and territory heating and cooling subsidy schemes. Lymphoedema is the accumulation of excessive amounts of protein-rich fluid resulting in swelling of one or more regions of the body.

This is due to a mechanical failure of the lymphatic system and occurs when the demand for lymphatic drainage exceeds the capacity of the lymphatic circulation. The condition usually affects the limb(s) although it may also involve the trunk, breast, head and neck or genital area.

Whether primary or secondary, lymphoedema develops in stages, from mild to severe. Methods of staging are numerous and inconsistent. They ranged from three to as many as eight stages. In Australasia, the most commonly used stage scale is that adopted by The International Society of Lymphology (ISL) (3), which identifies the following stages:

• Stage 0A: A latent or subclinical state where swelling is not evident despite impaired lymph transport.

• Stage I: This represents early onset of the condition where there is an accumulation of tissue fluid with higher protein content, which subsides with limb elevation. The oedema may be pitting at this stage.

Stage II: Limb elevation alone rarely reduces swelling and pitting is manifest. In later Stage II the limb may or may not pit as fat and fibrosis supervenes.

• Stage III: The tissue is hard (fibrotic) and pitting is absent. Skin changes such as thickening, hyperpigmentation, increased skin folds, fat deposits and warty overgrowth develop.

Stage III encompasses lymphostatic elephantiasis. At this stage, the swelling is spontaneously irreversible and usually the limb(s) is very large**.

The Cancer Council Australia website recommends to avoid putting pressure on the affected area to “keep cool in summer as the heat may make swelling worse — have cold showers, stay indoors during the hottest part of the day and drink plenty of water”*>.

While avoiding heat induced swelling is a standard lymphoedema management recommendation, it is unclear if NDIS funding for air conditioning would meet R & N legislative requirements for this cohort as there are more appropriate, lower cost management options.

Familial disautonomia (a genetic disorder affecting individuals’ automatic (involuntary) bodily responses)

Heating and cooling

54 Australasian Lymphology Association, ‘What is Lymphoedema?’, 2019, ttps: mphoedema.org.au/about-lymhoedema/what-is-lymphoedema/, accessed 11 October 2019. 55 Cancer Council Australia, ‘Lymphoedema treatment and management’, 2015, hits://www.cancercouncil.com.au/cancer-information/managing-cancer-side- effects/lymphoedema/treatment-and-management/, accessed 17 October 2019.

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Complex Regional Pain Syndrome

Heating and cooling

Pain Australia define Complex Regional Pain Syndrome (CRPS) as “a chronic nerve pain condition that usually affects the arms, legs, hands or feet. CRPS can occur after injury or trauma and is believed to be caused by damage to, or malfunction of, the nervous system. People with CRPS may experience any or all of the following symptoms: burning or ‘pins and needles’ sensations; constant or intermittent changes in temperature and skin colour; swelling of the affected limb; loss of fine motor control; tremors or spasms; or stiffness. CRPS used to be known as Reflex Sympathetic Dystrophy (RSD).”

The National Institute of Neurological Disorders and Stroke writes that “People with CRPS also experience changes in skin temperature, skin color, or swelling of the affected limb. This is due to abnormal microcirculation caused by damage to the nerves controlling blood flow and temperature. As a result, an affected arm or leg may feel warmer or cooler compared to the opposite limb. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red… [this means that another common feature of CPRS is] abnormal sweating pattern in the affected area.”.

A study from 2006 studied 12 patients in whom CRPS type 1 through applying heat and cooling to the patient’s hands and using videothermography to measure the response. The study found that patients with CRPS did have a level temperature regulation dysfunction and that the sympathetic efferent system is involved in CRPS®. Efferent neurons carry nerve impulses from the central nervous system to the muscles.

56 US National Library of Medicine, ‘Familial dysautonomia’, 2019, https://ghr.nlm.nih.gov/condition/familial-dysautonomia, accessed 17 October 2019. 57 Familial Dysautonomia Foundation, ‘About FD’, 2018, https://familialdysautonomia.org/about-fd 58 Pain Australia, ‘Complex regional pain syndrome’, https://www.painaustralia.org.au/about-pain/forms-of-pain/complex-regional-pain-syndrome, accessed 11 October 2019. 59 National Institute of Neurological Disorders and Stroke, 2019, https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet, accessed 16 October 2019. ® Niehof, SP, ‘Thermography imaging during static and controlled thermoregulation in complex regional pain syndrome type 1: diagnostic value and involvement of the central sympathetic system’, vol. 5, no. 30, 2006, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1479347, accessed 17 October 2019.

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Stroke / Acquired Brain Injury

Cooling or heating

The Better Health Channel (VIC) discusses how ABI affects a person and states that “The long-term effects of brain injury are difficult to predict. They will be different for each person and can range from mild to profound. It is common for many people with ABI to experience increased fatigue (mental and physical) and some slowing down in how fast they can process information, plan and solve problems. They may experience changes to their behaviour and personality, physical and sensory abilities, or thinking and learning”™.

Johns Hopkins Medicine™ and the Healthline website both state that damage to specific parts of the brain can affect the body’s ability to regulate temperature.

A 2018 publication in the Handbook of Clinical Neurology discusses thermoregulation dysfunction in brain injury patients. This study found that;

• “Different mechanisms explain thermoregulatory dysfunction following ischemic stroke, hemorrhagic stroke, and traumatic brain injury. Temperature instability following brain injury likely involves hypothalamic injury, pathologic changes in cerebral blood flow, metabolic derangement, and a neurogenic inflammatory response”™.

A cross-sectional study from 2017 examined “100 patients with ischemic or hemorrhagic stroke sequelae with unilateral hemiparesis and thirty healthy subjects. Individuals with nervous peripheral lesions, diabetes, peripheral vascular diseases or tumors were not included in this study. The volunteers underwent axillary temperature evaluations with the use of a cutaneous thermometer and evaluations of cutaneous temperature of hands and feet as measured by infrared thermography captured by an infrared sensor (ThermaCAMTM SC 500-FLIR Systems). The mean temperature (°C) was analysed”. The study concluded that the Healthy individuals that were part of the study had “temperature symmetry between sides of the body, while individuals with stroke sequelae present lower temperature in the paretic side, especially on their feet”®.

There is also a substantial amount of research and patient studies examining the immediate onset of fever in the acute period post-stroke. For example, “subarachnoid haemorrhage, cerebral trauma, along with ischaemic or haemorrhagic stroke are strongly associated with the development of central fever”®.

References

[1] Better Heath Channel, ‘Acquired Brain injury’, 2014, https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/acquired-brain-injury, accessed 16 October 2015.

[2] Johns Hopkins Medicine, ‘Effects on Stroke’, 2019, https://www.hopkinsmedicine.org/health/conditions-and-diseases/stroke/effects-of-stroke, accessed 15 October 2019.

[3] Healthline, ‘The effects of Stroke on the Body’, 2017, https://www.healthline.com/health/stroke/effects-on-body#1, accessed 15 October 2019.

[4] Gowda, R et al., ‘Thermoregulation in brain injury’, in Handbook of Clinical Neurology, vol. 157, no. 2018, pp. 787-797, https://www.sciencedirect.com/science/article/pii/B9780446460741000495, accessed 17 October 2019.

[5] Alfieri, FM et al., ‘Evaluation of body temperature in individuals with stroke’, Neuro Rehabilitation, vol. 40, no. 1, 2017, pp. 119-128, https://www.ncbi.nlm.nih.gov/pubmed/27935558, accessed 16 October 2019.

[6] Zawadska, M ‘ Thermoregulation disorders of central origin - how to diagnose and treat’, Anaesthesia Intensive Therapy, vol. 49, no. 3, 2017, pp.227-234, https://www.ncbi.nlm.nih.gov/pubmed/28803441, accessed 17 October 2019.

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ASD

Heating or cooling

The DSM-5 listing for Autism Spectrum Disorder Diagnostic Criteria lists the following: B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text): 4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement). The Raising Children website writes that some children with autism spectrum disorder commonly have sensitivities (hyposensitive or hypersensitive) to environmental stimuli such as noise, light, clothing or temperature®’. As an example for temperature under sensitivity, a child might want to wear warm clothes in summer heat, or not feel the cold and wear shorts in winter.

The Mayo Clinic website, AutismNT and Better Health Channel websites all provide similar information about ASD and sensory issues.

While there is substantial evidence to support the link between ASD and sensory issues regarding temperature, there is little evidence to support air-conditioning or heating to be an effective and beneficial disability related health support. It is likely that heating or cooling related supports would only meet R & N for participants whose hyposensitivity or hypersensitivity to temperature was so significant that it placed the participant at risk.

Cerebral Palsy

Heating or cooling

When searching for information on cerebral palsy and thermoregulation or temperature sensitivities very little information came up. A few blogs and personal testimonies for assisting your child with CP in summer were available, but no published quality studies.

However, there is a substantial amount of information indicating that people with CP may experience disturbances in homeostatic functions resulting in autonomic dysfunction / neuropathy. However, a 2017 publication in the Journal for Developmental Medicine and Child Neurology provided a short summary of the research into the link between CP and autonomic dysfunction and concluded that while the link is well known, there is a surprising lack of methodologically sound cohort studies to support it®*.

®? Raising Children Website, ‘Sensory Sensitivities: children and teenagers with autism spectrum disorder’, accessed 17 October 2019.

®8 Dan, B, ‘Understanding the autonomic nervous system in cerebral palsy’, editorial, Developmental Medicine & Child Neurology, 2017, https://www.onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.13440 , accessed 16 October 2019.

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Mayo Clinic states that: “Autonomic neuropathy occurs when the nerves that control involuntary bodily functions are damaged. It can affect blood pressure, temperature control, digestion, bladder function and even sexual function. The nerve damage interferes with the messages sent between the brain and other organs and areas of the autonomic nervous system, such as the heart, blood vessels and sweat glands”. Autonomic dysfunction often results in sweating abnormalities, making it difficult for people to regulate body temperature.

One study from 2011, published in the Journal of Oral Pathology and Medicine, studied saliva samples of ninety people with CP compared the saliva samples of their sibling volunteers with no neurological damage. The study found that the individuals with CP presented a significant reduction in salivary flow rate and increased protein concentrations compared to the control group, indicating autonomic dysfunction.

An electronic magazine ‘Complex Child’ which is written by parents of children with disabilities, published an article in 2010 ‘Autonomic Dysfunction in Children with Cerebral Palsy, Static Encephalopathy, and Similar Conditions’. Complex Child conducted a “survey for children with cerebral palsy and similar conditions to evaluate the frequency of autonomic symptoms and likely Autonomic Dysfunction”. The survey found that “80% of children had some degree of difficulty regulating their body temperature, but only 26% ran a fever, became hypothermic, or had a life-threatening response to heat or cold”. Other autonomic symptoms were recorded: 11% of the children were not able to sense external temperature and 33% experienced sweating issues.

While this study was not published in a high quality medical journal or endorsed by a specialist in the field, the person who conducted the study, Susan Argawal, is a humanities academic in the Chicago area so would be familiar with research methodologies.

It appears that while the thermoregulation link in CP is generally accepted, there is a significant lack of well-grounded research.

Fanconi Anemia

Heating or cooling depending on the person’s complex healthcare circumstances.

The National Organization for Rare Disorders defines Fanconi anaemia (FA) as “a rare genetic disorder, in the category of inherited bone marrow failure syndromes. Half the patients are diagnosed prior to age 10, while about 10% are diagnosed as adults. Early diagnoses are facilitated in patients with birth defects, such as small size, abnormal thumbs and/or radial bones, skin pigmentation, small heads, small eyes, abnormal kidney structures, and cardiac and skeletal anomalies. The disorder is often associated with a progressive deficiency of all bone marrow production of blood cells, red blood cells, white blood cells, and platelets. Affected individuals have an increased risk of developing a cancer of blood-forming cells in the bone marrow called acute

®° Mayo Clinic, ‘Autonomic Neuropathy’, 2019, https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829, accessed 15 October 2019.

7° Ferreira, MC, et al., ‘Autonomic nervous system in individuals with cerebral palsy: a controlled study’, Journal of Oral Pathology & Medicine, 2011, https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1600-0714.2011.01008.x, accessed 15 October 2019.

7° Agrawal, S, ‘Autonomic Dysfunction in Children with Cerebral Palsy, Static Encephalopathy, and Similar Conditions’, Complex Child E Magazine, 2010, http://www.articles.complexchild.com/june2010/00207.pdf, p.6,

“Op cit., p.9.

26 Page 46 of 335

myeloid leukaemia (AML), or tumors of the head, neck, skin, gastrointestinal system, or genital tract

The US National Library of Medicine list the common symptoms or abnormalities that people with FA experience:

• More than half of people with Fanconi anaemia have physical abnormalities. These abnormalities can involve irregular skin coloring such as unusually light-colored skin (hypopigmentation) or café-au-lait spots, which are flat patches on the skin that are darker than the surrounding area. Other possible symptoms of Fanconi anemia include malformed thumbs or forearms and other skeletal problems including short stature; malformed or absent kidneys and other defects of the urinary tract; gastrointestinal abnormalities; heart defects; eye abnormalities such as small or abnormally shaped eyes; and malformed ears and hearing loss. People with this condition may have abnormal genitalia or malformations of the reproductive system. As a result, most affected males and about half of affected females cannot have biological children (are infertile). Additional signs and symptoms can include abnormalities of the brain and spinal cord (central nervous system), including increased fluid in the center of the brain (hydrocephalus) or an unusually small head size (microcephaly)

While there was no readily available information supporting the direct link between FA and thermoregulation or autonomic dysfunction, people with FA frequently have related disorders including: chromosomal instability disorders, acquired plastic anaemia, Thrombocytopenia-absent radius (TAR) syndrome, Dyskeratosis congenita, also known as Zinsser-Cole-Engman syndrome, VACTERL association, Myelodysplastic syndromes (MDS) and Acute myeloid leukemia (AML)

Endocrine problems are also common in people with FA. A literature review published in 2015 examined endocrine disorders in FA patients and found that “About 80% of children and adults with FA have at least one endocrine abnormality, including short stature, GH deficiency, abnormal glucose or insulin metabolism, dyslipidemia, hypothyroidism, pubertal delay, hypogonadism, or impaired fertility”. Hypothyroidism is well known to impact on metabolic processes and result in poor ability to tolerate cold.

A participant with FA is likely to have a significantly complex combination of health and disability related care needs. A health related requirement for maintaining environmental temperature could arise from several health conditions.

Spina Bifida

There is no readily available evidence to support the link between Spina Bifida and an inability to regulate heat.

The TAT advice that was published relating to Spina Bifida and air-conditioning was for a participant with a complex combination of health conditions including: osteoarthritis, HIV, sarcoidosis of the lungs, type 2 diabetes resulting in liver, kidney and pancreas damage.

73 National Organization for Rare Disorders, ‘Fanconi Anemia’, 2019, https://rarediseases.org/rare-diseases/fanconi-anemia, accessed 17 October 2019.

74 US National Library of Medicine, ‘Fanconi anemia’, 2019, https://ghr.nlm.nih.gov/condition/fanconi-anemia

75 https://rarediseases.org/rare-diseases/fanconi-anemia, accessed 17 October 2019.

76 National Organization for Rare Disorders, ‘Fanconi Anemia’.

Air Conditioning

Types of air conditioning systems

There are two main types of air conditioning products on the market:

1. Refrigerative products (using the vapour compression cycle)
2. Evaporative products**.

Refrigerative Air Conditioning

Below are the types of refrigerative air conditioners available with average price ranges as at 2019**.

**77 Energy Rating,

Evaporative Air Conditioning

Evaporative air conditioners rely on the evaporation of water to cool air and in doing so increase the humidity in the space being cooled. Because of this, these types of systems are effective in drier climates, but not other areas.

Unlike conventional air conditioners (which remove moisture from the cooled space and work best in a sealed room), evaporative air conditioners require a large volume of fresh air to pass through the house, so ventilation to allow internal air to escape is essential.

Evaporative air conditioners can also consume substantial volumes of water, which may be an issue to consider for homeowners. 79

Evaporative coolers don’t suit high humidity environments, such as QLD, NT and northern WA, but may be more suitable for southern, less humid Australian areas, like ACT, VIC, SA and TAS. *°

Evaporative coolers typically range in price from around $100, going up to close to $400. **

Components in determining air conditioning selection

According to The Energy Rating Website (a joint initiative of Australian, State and Territory and New Zealand Governments), when considering purchasing a new air conditioner, the most important initial step is to select a suitably sized unit.

There are many different elements within the home that will impact on the size air conditioner required. These include (but are not limited to):

• Whether the purchaser looking to heat/cool a single room, a larger space or an entire home;
• Size of room/home (including ceiling height);
• External wall materials;
• Insulation levels; and
• How many windows in the area, their glazing, shading and orientation. *

Strength and Capacity

Canstar Blue, the consumer review and comparison website, give a general indication of the strength and type of air conditioning system best suited to room size, ** and the average cost of air conditioners per kilowatt capacity ™.

79 Energy Rating,

Strength/Type per room size

Average cost of air conditioners per kilowatt capacity

Energy Costs

Australian consumer advocacy group Choice suggests that running costs for a medium-sized air conditioner ranges from around $400 to $550 a year.

Choice measured running costs in their air conditioner reviews and determined that running costs can vary by a few hundred dollars a year, depending on the model®. They reviewed reverse-cycle split-system inverter air conditioners, ranging from small 2kW models suitable for a single bedroom, up to large models of 10kW or more, suitable for a large open-plan living area.

Figures above are based on how much each model costs to deliver a set amount of cooling and heating per year at maximum capacity, with the remainder of the year in standby mode (based on electricity costs of 30 cents/kWh).

®5 Choice, “How to buy the best air conditioner”, [website], 2019. https://www.choice.com.au/home-and-iving/cooling/air-conditioners/buying-guides/air-conditioners, accessed 7 September 2019.

Energy Ratings

In May 2019, energy rating labelling on air conditioners changed with the introduction of a new format label, showing how climate affects the energy efficiency of these appliances. The new air conditioner label indicates the difference in energy efficiency, depending on which of the three climate zones — hot, average or cold - in which it is used. The climate zone performance information helps consumers to purchase air conditioners best suited for their location.

Selection

In selecting the appropriate air conditioning type there are various factors which need to be considered. Considering the above information, a potential checklist might look like the following:

1. GEOGRAPHIC REGION: Identify the region using the Climate Zone Rating developed by the E3*, which will give an indication of the type of air conditioning suitable.
2. SPACE SIZE: Determine the size of space which requires conditioning, which will give an indication of the strength and therefore type of air conditioner suitable.
3. BUILDING MATERIALS: Determine external wall materials (e.g., extent of glazing) and insulation levels of the home, which will give an indication of strength and therefore type of air conditioner suitable.
4. Select product.

86 Equipment Energy Efficiency (E3) program is a cross jurisdictional program through which the Australian Government, states and territories and the New Zealand Government collaborate to deliver a single, integrated program on energy efficiency standards and energy labelling for equipment and appliances.

Cost and availability of Cooling Garments

There are several retail outlets in Australia for the purchase of cooling garments. The most prominent/popular garment appears to be the cooling vest. Cooling garments are promoted/marketed to those not just with a disability e.g. MS and spinal cord injury, but also to sports people/athletes, and outdoor workers. The market focus to disability is mainly directed to those with MS and Spinal Cord Injury.

Below is a table indicating the garment range and cost ranges sourced and collated from seven retail outlets in Australia.

Literature Review - Cooling Garments

A literature review was carried out on the efficacy of cooling garments (See Appendix B for full summary).

A search for literature was carried out on the disability types in relation to thermoregulation and cooling garments. The only research found directly related to a disability was for MS and SCI, with most studies focusing on MS.

There is no significant research available on the efficacy of cooling garments, much of the research was outdated, and there was no indication in a rising research trend in this area, and the overall quality was rated “low”.

The effectiveness of cooling garments is dependent on the type of health condition and the type of heat loss that the person requires (e.g. radiation, conduction, convection or evaporation of water).

Most of the SCI research sourced was directed to sports people/athletes during performance.

Cooling garments for MS

As mentioned above in the MS section, a literature review was published in 2010 examining the effectiveness of cooling techniques for thermally sensitive people with multiple sclerosis. The review found that:

• “Investigations have examined the use of cooling garments (microclimate cooling) to combat heat-induced worsening of symptoms in MS patients during daily activities or during exercise. Typically these garments come in two designs based on heat exchange properties.

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Active heat exchange garments and cooling effects

Active heat exchange garments are cooled by circulating liquid throughout the garment through a tubing network. Passive heat exchange garments have ice or gel packs that are inserted into the garment to provide the cooling effect.

Cooling garments have demonstrated improvements in neurological function (motor performance and visual acuity) as well as perceived subjective benefits (feeling less fatigued) in thermally sensitive MS patients.

A number of factors influence the ability of these garments to provide effective cooling: 1) garment fit, 2) location of cooling elements within the garment, 3) cooling temperature and whether the cooling process is continuous or intermittent, 4) body size and shape, and 5) control and regulation of skin blood flow of the skin being cooled. Although microclimate cooling has been shown to be effective in reducing heat stress in MS, some caution must be considered because cooling garments may increase metabolic rate and arterial blood pressure, and decrease mechanical efficiency for patients with disabilities during the performance of physical work due to cooling equipment weight or restrictions in joint mobility. The cost of these garments also my limit accessibility and availability to some individuals with MS*’.

Air conditioning usage across Australia | Commented [AH8]: ABS data is old and not worth using/extrapolating. Find other air con usage data.

There has been no release of ABS data or comparable data since 2014 and no planned future release of data. In this paper we have referenced two data sources:

• The data from 2014 (4602.0.55.001 - Environmental Issues: Energy Use and Conservation, Mar 2014) is a sample report only (not a full census report), so there is no further subsets or micro data attached — meaning we cannot further break down the data to regions beyond capital city/balance of state.
• Previous releases of the data (such as 4602.0.55.001 - Environmental Issues: Energy Use and Conservation, Mar 2011) again were sample reports but only provided state figures (no capital city/balance of state data).

Air conditioning* - Number and percentage of homes: 2005-2017

State only data. ABS data for all states from 2005 to 2014. Data provides the details of the number and percentage of homes with a form of air-conditioning.

*7 Davis, loc cit.

Conclusion:

There is evidence to support the DRHS requirement for AC or heating (or both) for these disability types:

• Multiple Sclerosis, Spinal cord injury, Tetraplegia (quadriplegia), Junctional Epidermolysis Bullosa, Stroke, ABI, Dravet syndrome, Parkinson’s Disease, Complex Regional Pain Syndrome, Fibromyalgia, Familial disautonomia, Motor Neurone Disease.

In some circumstances there may be enough evidence to support the DRHS requirement for AC or heating (or both) for these disability types:

• ASD, Fanconi Anemia, Epilepsy, Lymphoedema (>Grade 1), Scleroderma, Cerebral Palsy, Systemic Lupus Erythematosus (SLE), Post-Polio syndrome/Poliomyelitis, Muscular Dystrophy.

There is not enough evidence to support the DRHS requirement for AC or heating (or both) for these disability types:

• Spina bifida.

Recommendations:

• Given that some conditions have a temperature sensitivity to both heat and cold, a split system is likely to be the most cost effective system.
• The new DRHS policy, including the new DRHS operational guidelines does not effectively take into account atypical DRHS items, such as air conditioning.
  • For many of the health conditions considered above air conditioning meets the two criteria: directly related to the participant’s ongoing functional impairment and required on an ongoing (regular) basis.
• The NDIA needs to develop a policy statement or additional guidance outlining the funding position for air conditioning and heating.
• For some participants it will be reasonable and necessary to fund DRHS to regulate environmental temperature to manage their thermoregulation dysfunction or temperature sensitivity, but this needs to be based on the severity of these symptoms.
• For some participants, environmental temperature regulation will not be an essential support and will be more about comfort. This differentiation is not reflected in the current policy.
• Basically, there will be some DRHS supports where the requirement is ongoing, directly related to a functional impairment, and will likely ‘improve the participant’s life through making them more comfortable’, but this does not mean that the symptoms that they are intended to manage are significant or severe enough to warrant NDIS funding being used.
• Air conditioning and heating, particularly after the McKenzie ruling, are DHRS that poses a significant financial risk.

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Appendix A

Table 1: Breakdown of summary of TAT advices

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Table 2: Summary of the advices

The supply and installation of an air-conditioning unit is considered a day- to-day living cost and the responsibility of the home owner to fund as per NDIS (Supports for Participants) Rules 5.1. (d) |

“In warmer weather, her inability to regulate body temperature can result in excessive sweating which will have significant impact on her skin integrity, placing her at a high risk for serious pressure injuries”

Advisor research: Michelle B. Trbovich, John P. Handrakis, Nina S. Kumar & Mike J. Price (2019) Impact of passive heat stress on persons with spinal cord injury: Implications for Olympic spectators, Temperature, DOI: 10.1080/23328940.2019.1631730

@ People with SCI demonstrate altered thermoregulatory physiological response to passive heat stress.

fl “Feeling too hot or cold at home” has been identified as a barrier that affects health related quality of life for people with SCI.

f Passive heat stress and exposure to cool temperatures impacts cognitive performance of people with SCI. | Home Modifications | NOT DECLINED Decision appears to be related to thermoregulation issue and participant at risk of Autonomic Dysreflexia | NOT DECLINED. Air-conditioning will allow the participant to access the essential areas of her home used for daily activities at a safe temperature. There is evidence that this support will substantially improve her life stage outcomes (Supports for Participants Rule 3.1 (b)).

Alternatives to air-conditioning were considered and found not to meet the participant’s needs (Supports for Participants Rule 3.1 (a)).

Prior to approval of any funds related to an air-conditioning system it should be communicated to the participant that future electricity costs for operating this system are not the responsibility of the NDIS to fund as outlined below.

| Home Modifications | Declined | Declined. The requested split system air-conditioner for the participant’s bedroom does not meet Section 34.1c or Rule 5.1d |

Appendix B — Literature Review - Cooling Garments

Each research item has been given a quality of evidence rating using GRADE and CRAAP Guidelines as per the Draft TAT Research Team: Work Processes & Research Tools, 2019.

Reference List

Note: abstracts have only been referenced when full access was not possible.

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Queensland Government, Queensland Health,