Perceptions of aquatic physiotherapy and health‐related quality of life among people with Parkinson’s disease

Abstract Background Enablers for people with Parkinson's disease (PD) participating in aquatic physiotherapy have been identified, and exercise improves health‐related quality of life (HRQoL) but it is unclear whether all enablers and barriers for aquatic physiotherapy specific to the PD population have been explored. Objective To describe HRQoL in people with PD who have undertaken aquatic physiotherapy, and explore their perceptions and attitudes regarding the programme. Methods Twenty‐one participants who participated in a pilot trial on aquatic physiotherapy were included. Participants completed a survey regarding their experiences. The Parkinson's Disease Questionnaire‐39 (PDQ‐39) and Personal Well‐being Index‐Adult (PWI) were used to quantify HRQoL, whilst focus groups were conducted to explore their perceptions and attitudes. Descriptive statistics were used to summarize HRQoL scores. Focus group data were analysed using the deductive coding method. Results Most participants felt that the aquatic programme was worthwhile (n = 20/21, 95%). However, they had poor overall well‐being (mean 41.6, SD 13.5) and HRQoL (mean 31.0, SD 13.2) as measured by the PWI and PDQ‐39. Several barriers to aquatic therapy including safety when getting dressed, fatigue and transport were identified although many enablers were also identified, including an improvement in function, less falls and group socialization. Conclusions Aquatic physiotherapy was well‐accepted. Participants felt their function improved and felt safe in the water. HRQoL is lower in individuals with PD when compared to Australian norms; thus, interventions to optimize HRQoL need to be explored further. Patient or Public Contribution Patients participated in the aquatic intervention, survey and focus groups.


| INTRODUC TI ON
Parkinson's disease (PD) is a progressive neurological disorder that has a significant impact on both motor function and health-related quality of life (HRQoL). 1,2 The ability to communicate and have social connectedness has been associated with better HRQoL outcomes in people with PD, 3 whilst depression and the incidence of falls has been found to be a strong predictor of low HRQoL scores in this population. [4][5][6][7] As falls occur in 30%-50% of all people with PD, 8 it is vital to find treatment options that can improve both postural control and HRQoL. Although exercise has been seen to have a positive effect on falls and HRQoL, 9 research has indicated that common barriers such as lack of time, fear of falling and low outcome expectation are perceived in community dwelling individuals with PD. 9 Previous research has also shown that participation in exercise programmes is low in people with PD. [10][11][12] Evidence suggests that aquatic physiotherapy may have a positive effect on HRQoL in people with neurological conditions such as multiple sclerosis and stroke, as well as those with musculoskeletal conditions (e.g. osteoarthritis) as it provides social connectedness among participants and addresses specific impairments including pain and reduced mobility. [13][14][15] There is also growing evidence that exercising in groups where social bonds are formed leads to better performance 16 and increased engagement in exercise in people with PD. 10,11,17 People with PD are vulnerable to the impact of aquatic physiotherapy on their cardiovascular and respiratory systems 12 but research has shown that it is a safe environment for people with PD to exercise. 12,18,19 Previous studies in people with PD have found that aquatic physiotherapy has a positive impact on HRQoL [19][20][21][22][23][24][25] ; however, only three studies were randomized controlled trials with small participant numbers 19,21,24 Considering people with PD are more inactive than their community dwelling counterparts, and become even less so as the disease progresses, 26 there is a need to better understand the perceived barriers and enablers to aquatic therapy so that engagement in exercise can be maximized for best functional outcomes in this population.
Previous literature has identified that the main enablers for people with PD to participate in a short-term aquatic physiotherapy programme include having a supportive exercise leader and social interaction with other participants, but no specific barriers to attendance have been identified. 27 Other research in community dwelling older adults has shown that motivational factors for aquatic physiotherapy include a reduction in pain and improved health and fitness, whilst changing clothes afterwards is a large barrier to participation. 28 Whether the same barriers apply to people with PD is unknown. It is also unclear whether all the enablers and barriers for aquatic physiotherapy specific to the PD population have been explored. Given that exercise participation in this population is low, this area warrants additional investigation. Thus, the aim of this study was to describe the HRQoL in those with moderate PD, and explore participant perceptions regarding barriers and enablers of aquatic physiotherapy as a treatment modality.

| Design
This was a concurrent nested study within a previous single-blind pilot trial ( Figure 1) that examined the feasibility of a Halliwick concept style aquatic therapy programme for people with PD. 12

| Participants
Individuals who completed the aquatic programme were invited to participate in this study. The sample and sampling procedures for the F I G U R E 1 Timeline of data collection. HRQoL, health-related quality of life; PDQ-39, Parkinson's Disease Questionnaire-39; and PWI, Personal Well-being Index pilot trial have been described in detail elsewhere. 12 In brief, participants were required to have a diagnosis of idiopathic PD confirmed by a neurologist, transfer and walk without assistance with or without gait aid (as clients are required to independently transfer in and out of the pool via steps), and have a Mini-Mental State Examination (MMSE) score of 24 or above so that they can follow instructions.
Participants were recruited from local Movement Disorders clinics, private neurologists and from local support groups to ensure the sample would capture the broad characteristics of people with PD. Participants were also sent information regarding the study if they had been involved previously with the Movement Disorders Program at Peninsula Health or if they had telephoned to enquire about the study.

| Data collection
Data for this study included patient experience survey responses (Phase 1), measures of HRQoL (Phase 2) and focus groups (Phase 3). Demographic data such as age, gender, disease duration, disease severity as measured by the Hoehn & Yahr scale, 29 social situation, falls history and medical co-morbidities were also collected.

| Measurement instruments
The patient experience survey contained statements (Box 1) that were designed to seek feedback regarding participants' experiences with aquatic physiotherapy. Responses to each statement were recorded using a 5-point Likert scale that ranged from strongly disagree to strongly agree.
The PWI is a measure of life satisfaction where higher scores indicate better satisfaction. 32 The PWI consists of seven domains (standard of living, health, achieving in life, personal relationships, safety, feeling part of the community and future security) with two optional questions regarding religion and global life satisfaction. Each item is scored on a scale from 0 to 10 and converted to a number between 0 and 100. The summary index score (PWI-SI) is an average of all domains and expressed from 0 to 100. 30 The PWI has been shown to have good convergent validity and test-retest reliability. 33 Although the PWI is not a PD-specific outcome measure, it has been used to measure life satisfaction in other neurological subgroups 34 and comparisons with community norms can be made.
The PDQ-39 is a disease-specific measure of HRQoL, where higher scores indicate poorer perceived HRQoL. 31 The PDQ-39 consists of 39 items that are organized into eight domains (mobility, activities of daily living, emotional well-being, stigma, social support, cognition, communication and bodily discomfort). All items are scored on a 5-point rating scale ranging from 0 (never) to 4 (always).
Summary scores can be computed for each individual domain as well as the total scale to provide an indication of the overall impact of PD on HRQoL. The PDQ-39 is a tool that has been recommended to measure HRQoL in the PD population 7,35 and has been shown to have good content and construct validity 36,37 and high test-retest reliability. 38,39

| Data analysis
All quantitative data were analysed using SPSS v25.0 (SPSS Inc, Chicago, Illinois). Descriptive statistics were used to summarize the demographic and clinical characteristics of all participants.

Box 1 Patient experience survey statements
Q1. I found the programme to be worthwhile Q2. The programme was easy to follow Q3. I felt safe at all times during exercise session Q4. Exercises were modified to suit my limitations/ability Q5. I enjoyed exercising with other people in a group environment Q6. I was able to communicate with other patients and the therapist Phase 1: Responses from the patient experience survey were classified as 'agree' (agree/strongly agree), 'neutral' and 'did not agree' (disagree/strongly disagree) and analysed descriptively. Data from the focus groups were analysed using the deductive coding method and were guided by the COM-B model. 51 The COM-B framework is part of the behaviour change wheel that identifies 3 main components when trying to understand behaviour: capability, opportunity and motivation. 51 This model suggests that participants require these three components to successfully engage in any given behaviour. In this framework, 'capability' is defined as the ability to physically and psychologically engage in activities with the appropriate knowledge and skill. 51 'Opportunity' to complete the behaviour can be physical or social, and 'motivation' is the conscious and subconscious processes that drive someone to complete a behaviour. 51 Each component is able to influence another in this system. 51 Inductive coding using open, axial and thematic coding techniques was used. Initial analysis identified key codes in the data, which were then gradually and systematically organized into larger themes.

| Participants
Twenty-one participants with a mean age of 70 (SD 8.2) and moderate disease severity (median Hoehn & Yahr score of 3; IQR 1) participated in this study. Overall, the mean disease duration of participants was 6 years (range 1-23) and there was an even distribution of those who reported having a fall in the past 12 months (n = 11; 52%). Five of the 21 participants (24%) lived alone.
Participant demographic and HRQoL characteristics are described in Table 1.

| Phase 1: Patient experience survey
All participants (100%) completed the patient experience survey, and Figure 2 illustrates their responses. All participants reported that the exercises were adapted to suit their ability and that they enjoyed exercising with other people in a group environment. The majority felt that they found the programme to be worthwhile (n = 20/21, 95%) and that they were able to communicate with other participants and the therapist (n = 20/21, 95%). Most participants (n = 17/21, 81%) also reported they felt safe during the aquatic sessions and they felt the programme was easy to follow (n = 19, 90%).

| Phase 2: HRQoL
The HRQoL of participants as measured by the PWI and PDQ-39 is summarized in Table 1. Data for the spirituality domain of the PWI were not reported as 43% of the participants (n = 9) did not respond to this optional question. Results of the PWI (Figure 3) suggest that this sample of participants had poor overall wellbeing, with a mean summary well-being score of 41.6 (SD 13.5).
Participants reported that they were more satisfied with their personal safety and standard of living but were less satisfied with their personal health, life achievements and future security. A Friedman test comparing all seven PWI domains and the optional question on global life satisfaction found significant differences in the ratings across between these domains (P < .016). Post hoc Wilcoxon signed rank tests with a Bonferroni adjustment found participant ratings for personal health were significantly lower than ratings for personal safety (P < .001).

| Phase 3: Focus groups
Thirteen (10 males and 3 females) of 21 participants consented to take part in four separate focus groups, with groups ranging from two to four participants. Focus group participants ranged in age from 58 to 81 years (mean 73; SD 4.7) and had moderate disease severity (median Hoehn & Yahr score of 3; IQR 1). Mann-Whitney U tests were performed between those who did participate and those who did not participate in the focus groups for age, disease duration and disease severity. No significant differences were found between these groups (P = .26). Focus groups varied in length from 40 minutes to 1 hour.
Mapping of barriers and enablers using the COM-B framework is summarized in Table 2. Several barriers were identified for the capability and opportunity domains, and enablers for all domains, but no barriers for the motivation domain were observed.

| Capability
Several key themes that were identified as capability enablers to

| Opportunity
Opportunity enablers included exercising in a group (socialization), pool temperature and the water environment, and safety in the pool.
Many participants felt that the pool was a better environment for exercising when compared to on land as they felt it was safer 'We

| Motivation
No barriers related to motivation were identified; however, several

| Barriers
Barriers that related to opportunity included fatigue and difficulties with transportation to sessions. Several participants stated that they felt more fatigued after the aquatic physiotherapy 'I was more tired on the days that I did the exercise' (F, 71) but that this did not impact on their ability to perform their day to day tasks 'You do feel tired and you need a couple of hours to get over it' (M, 78).

| D ISCUSS I ON
This is the first study that has used the PWI to assess HRQoL in people with PD and it provides an insight into how satisfied this cohort of people with PD are with their personal life and social situation.
When compared to Australian norms, the participants in this study were less satisfied in most domains, which is not unexpected given that that the negative impact of PD on HRQoL is well-established [11]. Lower scores for the PWI domains were also observed for this sample compared to a sample with multiple sclerosis, including their overall well-being. This suggests that PD may have a greater impact on well-being compared to other neurodegenerative conditions. In addition, there was a wide range of intervention dosage across the comparator studies ranging from 2 weeks through to 26 weeks.
There was also variation in the type of intervention applied limiting direct comparisons. Whilst the differences between interventions and dosage may account for the variation in HRQoL, there may be Responses to the patient experience survey showed that participants felt the aquatic programme was beneficial, which suggests that this may be an acceptable treatment option in the PD population. Participants in the aquatic physiotherapy programme also stated they felt they were able to communicate with others and that exercising in a group was beneficial. This is consistent with previous research that has shown that group exercises may improve engagement and participation levels, performance and motivation. 16,17 A feeling of social connectedness is extremely important in the PD population, 3 as research has shown that as the disease progresses, so does the risk of social isolation 58 due to feelings of embarrassment regarding the motor symptoms. 59

| Limitations
A number of limitations need noting, in particular the small sample size and cross-sectional nature of this study. Our cohort had mildto-moderate disease severity; therefore, it is unknown whether the results of this study translate to those with severe PD. We also only evaluated the experience of participants at a single facility in metropolitan Melbourne, Australia. In addition, although two-thirds of participants attended the focus groups, the experiences of those who did not attend may not be represented in our qualitative data.
Nevertheless, we utilized member checking of transcripts to ensure that the data were trustworthy. Whilst the dosage of aquatic therapy in this study did not adhere to the European Parkinson's Disease Physiotherapy Guidelines, 60 the aim was not to determine efficacy of therapy. Our focus was to explore perceptions of aquatic therapy and to quantify the HRQoL of participants. Future larger scaled studies should consider using the TIDieR framework 61 when reporting aquatic interventions and examine whether aquatic physiotherapy impacts on life quality.

| CON CLUS IONS
Aquatic physiotherapy is a well-accepted form of treatment in PD participants, with minimal identified barriers. Participants felt that they improved in several areas of function and that the water was a safe environment in which to exercise. Social connections made in a group exercise environment aided in the participants' experience, and was a large enabler for therapy. Self-perceived HRQoL is lower in individuals with PD when compared to other neurological conditions and Australian norms, suggesting that people with PD are a particularly vulnerable population that need close monitoring. This information will provide further insights into the barriers to engaging in therapy in this population, assist in modifying perceptions towards exercise, and potentially improving exercise adherence.

ACK N OWLED G EM ENTS
The authors would like to thank Dr Tess Tesindos for her assistance with coding the qualitative data.

CO N FLI C T O F I NTE R E S T
The author(s) declare(s) that there are no conflicts of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.