Beliefs about Use of Complementary Health Approaches for Parkinson’s disease

Abstract

Parkinson’s disease (PD) is the second most common neurodegenerative disorder in the United States, which requires ongoing medication therapy. Despite the high prevalence of complementary health approaches (CHA) being used among people with PD in several countries, little is known about the perceived effectiveness, safety and risk related to use of CHA. The purpose of this study was to describe CHA users’ beliefs about the effectiveness, safety and risk of CHA. A sub-sample (n = 70) of participants who reported using CHA and who completed all 12 items of the section of participants’ beliefs were taken from a larger study (n = 143) that described the proportion of individuals who used CHA to manage PD symptoms. Participants reported that CHA are somewhat effective to control or manage PD symptoms and necessary for PD management. However, they disagreed on possible adverse effects of CHA and their potential interactions with prescription medications. Participants were willing to share their CHA use with their doctors and/or nurses and had a neutral response to the costs of CHA. More scientific evidence on effectiveness and safety/risk of CHA is needed to assist individuals’ informed decision about using CHA and allocation of their healthcare spending. Nurses and other healthcare professionals need to be aware of CHA users’ beliefs about CHA used for PD and of the need for provision of adequate information and resources, including locating qualified CHA practitioners or databases of CHA.

Parkinson’s disease (PD) is the second most common neurodegenerative disorder, which is prevalent among older adults in the United States (U.S.)¹ People with PD experience a wide range of motor and non-motor symptoms, which often interferes with individuals’ optimal function and activities of daily living.^2,3 Despite the essential role of pharmacological therapy in PD management, long-term use of pharmacological therapy often yields adverse reactions such as motor fluctuation and dyskinesia.⁴ Concerns about adverse reactions to antiparkinsonian medications are a frequent reason why people delayed medication therapy.⁵

A holistic model in PD management proposed a need to incorporate a biopsychosocial-spiritual concept into health care (p. 257).⁶ In the model, various types of CHA were addressed along with traditional medicine, including mind-body interventions, manual healing methods, diet/nutrition, and biologic treatments. Most of those therapies were part of complementary health approaches (CHA; formerly complementary and alternative medicine). CHA is a new term adopted by the National Center for Complementary and Integrative Health (NCCIH), which includes “a group of diverse medical and health care systems, practices, and products that are not considered to be part of conventional or allopathic medicine” (p. 6).⁷

Although use of CHA as part of self-management among people with PD in several countries has been reported in the literature,^8,9 there is limited evidence about CHA users’ perceived effectiveness, safety and risk related to use of CHA. Lökk and Nilson¹⁰ surveyed 421 people with PD at an outpatient clinic in Sweden regarding perceived effect of therapy using a 4-point Likert-type question. The majority of the CHA users in the study perceived no or some improvement. In a study in Singapore, 40% of complementary therapy users reported some degree of improvement in their PD while 58% reported no improvement.¹¹ Some CHA users also reported adverse reactions such as nausea and vomiting, limitation of limb movement after chiropractic treatment, aggravation of PD symptoms, and severe dyskinesia.¹² Participants who had used CHA discussed their concerns about risks associated with using CHA such as side-effects of invasive methods (e.g., acupuncture) and qualification of CHA practitioners.¹³ Lökk and Nilsson suggested that CHA users were influenced by their belief in CHA rather than by the perceived effect of CHA and they were more prone to try CHA in the future.¹⁰ Thus, further research is needed to provide a better understanding on beliefs about the specific CHA used among CHA users living with PD.

This study was influenced by the holistic model of PD management⁶ and the literature review on beliefs about CHA use in PD. The purpose of this study was to describe CHA users’ beliefs about the effectiveness, safety and risk of CHA for PD.

Methods

This study used a sub-sample from a larger research project. Its aim was to quantify the proportion of community-dwelling participants with PD who used CHA, and what they were using CHA for.⁹ Those who reported using CHA in the past 12 months were asked additional questions about their CHA beliefs. Only those who completed all 12 questions on beliefs about CHA were included. Twelve items regarding beliefs about CHA were developed by researchers and reviewed by a group of PD experts and three people with PD (Figure 1). IBM SPSS Statistics version 23 was used to analyze the data from the survey. After data were screened for missingness, descriptive statistics, including frequencies and percentages for categorical data were used to describe participant characteristics, types of CHA used, and participants’ beliefs about CHA. Means and standard deviations were used for continuous data.

Figure 1.

Beliefs about Use of Complementary Health Approaches (N = 70)

Note: 1 = strongly disagree, 2 = disagree, 3 = somewhat disagree, 4 = somewhat agree, 5 = agree, and 6 = strongly agree.

Procedures

Institutional Review Board approval was obtained from the researchers’ institution and informed consent was obtained from all participants with the survey. The data were collected from March 2015 to February 2016 using a mailed survey, which was developed by the researchers and validated by a group of experts. The survey included socio-demographic questions (e.g., age, sex, race/ethnicity, marital status, years of education, household annual income, healthcare spending/costs per month), disease-specific questions (e.g., duration of PD, age at onset, motor and non-motor symptoms, PD treatments, and other non-PD health related issues), and questions on use of CHA (e.g., previous and current use of CHA, in particular reasons for use of CHA and beliefs about CHA). A section on the participant’s beliefs about CHA included 12 items: Satisfaction of PD management, effectiveness, necessity, side and adverse effects, cost of CHA, and willingness to share their usage of CHA with healthcare professionals (see Figure 1). Participants were asked to share their beliefs based on a 6-point Likert-type scale (1 = strongly disagree, 2 = disagree, 3 = somewhat disagree, 4 = somewhat agree, 5 = agree, and 6 = strongly agree).

RESULTS

Characteristics of the participants

A sub-sample (n = 70) of participants who reported using CHA and who completed all 12 items of the section of participants’ beliefs were taken from a larger study (n = 143) that described the proportion of individuals who use CHA to manage PD symptoms. More than half (54.3%) of participants were males (Table 1). All participants had at least one healthcare insurance coverage. Most participants were Caucasians (92.9%), currently married (88.6%), and not working (88.6%). The average responder was 69.34 years (SD = 8.54), had 16.44 years of education (SD = 2.93), had been diagnosed for 6.73 years (SD = 5.52), and had 13.2 (SD = 5.56) out of possible 32 symptoms. All participants were taking at least one medication for their PD (M = 2.04, SD = 1.03), and used at least one CHA (M = 10.04, SD = 9.49) within the last 12 months. The CHA used by the participants included natural products and mind and body approaches. Top eight supplements and modalities were presented in Table 2. Vitamins (e.g., multivitamins, vitamins B12, C, and E), Coconut oil, and Coenzyme Q10 were commonly used natural products. Commonly used mind and body approaches included various types of exercise, yoga, massage, deep breathing exercises, prayer, meditation, Tai Chi, and acupuncture.

Table 1.

Sample Characteristics (N = 70)

Characteristics	n (%)
Sex
Male	38 (54.3%)
Female	32 (45.7%)
Race/ethnicity
Caucasian	65 (92.9%)
African American	1 (1.4%)
Asian	2 (2.9%)
Multiracial	2 (2.9%)
Marital status
Married	62 (88.6%)
Not married	8 (11.4%)
Employment
Working	8 (11.4%)
Not working	62 (88.6%)
Household income:
less than $20,000	(2.9%)
$20,000 to $40,000	(7.2%)
$40,000 to $60,000	(18.8%)
$60,000 to $100,000	(20.3%)
more than $100,000	(34.8%)
Do not wish to respond	(15.9%)
Monthly spending for health care
Less than $300	34 (48.6%)
$301–$500	11 (16.2%)
$501–$1,000	14 (20.6%)
More than $1,000	5 (7.4%)
Unsure	4 (5.9%)

Table 2.

CHA use in people with PD (N = 70)

	Used for PD	Used for general health
Vitamins and other supplements
Multivitamins	11 (16.2%)	45 (66.2%)
Vitamin D	11 (16.2%)	37 (54.4%)
Coconut oil	11 (16.2%)	14 (20.6%)
Vitamin B12	9 (13.2%)	28 (41.2%)
Vitamins C and E	9 (13.2%)	25 (36.8%)
Non-vitamin, non-mineral, natural products (e.g., herbs)	9 (13.2%)	12 (17.6%)
Coenzyme Q10	8 (11.8%)	13 (19.1%)
Diet based therapy (special diet)	8 (11.8%)	10 (14.7%)
Modalities and Therapies
Exercise (Spinning/cycling, swimming, rowing, dancing)	46 (67.6%)	35 (51.5%)
Yoga	16 (23.5%)	12 (17.6%)
Massage	15 (22.1%)	18 (26.5%)
Deep breathing exercises	14 (20.6%)	10 (14.7%)
Prayer	10 (14.3%)	20 (29.4%)
Meditation	9 (13.2%)	10 (14.7%)
Tai chi	8 (11.8%)	5 (7.4%)
Acupuncture	7 (10.3%)	5 (7.4%)

Note: This table presents only top eight supplements and modalities.

Beliefs about CHA

The mean satisfaction of current PD symptom management on a scale from 1 to 6 was 4.39 (SD = 1.08), indicating that on average people were more satisfied than not with their management (Figure 1). Participants reported that they believed CHA was somewhat effective in helping to control or manage their PD motor symptoms (M = 4.17, SD = 1.20) and non-motor symptoms (M = 4.13, SD = 1.13). The necessity of CHA for general health (M = 4.74, SD = 1.13) and PD management (M = 4.57, SD = 1.17) showed slightly higher scores than those of effectiveness of CHA on PD symptom management. However, participants responded ‘somewhat disagree’ on the following items, ‘CHA may give me side- and/or adverse effects’ (M = 2.87, SD = 1.32), and ‘CHA may have interactions with my prescription medications’ (M = 2.94, SD = 1.39). Participants also responded “somewhat agree” on the following: ‘I am not worried about side- and/or adverse effects of CHA’ (M = 4.34, SD = 1.38) and ‘I know what to look for in any side- and/or adverse effects of CHA that I used’ (M = 4.26, SD = 1.18). Participants agreed on the item, ‘I am willing to share my CHA use with my doctors and/or nurses’ (M = 5.26, SD = .65). Lastly, participants reported between ‘somewhat disagree’ and ‘somewhat agree’ on the item, ‘CHA is expensive’ (M = 3.6, SD = 1.52).

Discussion

There were some limitations in this study. Participants were from a small, homogenous sample, which prevents a generalization of findings beyond this sample. Findings were based on self-reports, so it might be affected by participants’ recall bias or their inclination to share socially desirable answers. The questions in the survey were developed by the researchers in order to explore the general understanding of CHA users’ belief about PD. Findings of this study were not intended to explain the various types of CHA used in PD. Thus, this would need to be addressed in future studies.

Findings of this study showed several inconsistencies with those of previous studies about perceived effectiveness of CHA among people with PD. Participants in this study believed that CHA were effective to manage PD symptoms and necessary for general health and PD management. However, it is hard to measure how effective those CHA were in managing PD symptoms as participants took at least one PD medication and were in different stages of PD. Their responses might have been based purely on their satisfaction level of current PD management, impacting their beliefs about effectiveness of the CHA they had used. In addition, a previous study found that CHA users did not communicate with their healthcare providers about their usage of CHA.¹⁴ In contrast, participants in this study reported that they were willing to share their usage of CHA with their healthcare professionals (e.g., doctors and nurses). They also showed their willingness to recommend CHA they have used to others. It could be that they may have received referrals from their healthcare professionals or they intended to share all available information with their healthcare professionals to achieve optimal care.

Previous studies did not fully address CHA users’ beliefs about safety and possible risks of CHA; although, there was one finding about management of safety and risks associated with usage of CHA in participants in a qualitative study.¹³ Participants’ approach to managing risks was to seek information by asking their nurses about potential risks from CHA (e.g., acupuncture) and to check CHA practitioners’ qualifications prior to initiation of CHA. Despite their knowledge of possible side and/or adverse effects of CHA, participants in this study did not agree on the possible side and/or adverse effects of CHA and interactions with their prescription medications. Of note, the question did not specify side and/or adverse effects of specific types of CHA used and frequency of use.

Participants had a neutral response to the costs of CHA, which was inconsistent with a previous finding that cost of CHA was a reason why some people did not use CHA.¹⁰ However, the question of cost of CHA needs to be elaborated on in future studies as specific costs of CHA used were not addressed in this study.

Findings of this study have implications for future research and holistic nursing practice. Given the limited information about scientific evidence on various types of CHA,¹⁵ future studies are needed as follows. More scientific evidence on effectiveness and safety/risk of some types of CHA (e.g., Coconut oil) is needed to assist individuals’ informed decision about using CHA and allocation of their healthcare spending. In addition, expanding healthcare coverage of evidence-based CHA could help people with limited, fixed income in using those CHA along with conventional PD treatments. Nurses and other healthcare professionals need to be aware of CHA users’ beliefs about CHA used for PD and of the need for provision of adequate information and resources, including locating qualified CHA practitioners or databases of CHA (e.g., NCCIH website).

In conclusion, participants in this study believed that CHA were effective to manage PD symptoms and necessary for general health and PD management. Thus, a holistic approach is to be incorporated into PD management. Future research is needed to establish scientific evidence on specific types of CHA to ensure safe and effective CHA use in PD.