A program that teaches Parkinson’s patients and their caregivers techniques to manage day-to-day activities over the course of this disease can help improve both life quality and effective self-care, a study from Sweden suggests.
The study, “Self-Management Education for Persons with Parkinson’s Disease and Their Care Partners: A Quasi-Experimental Case-Control Study in Clinical Practice,” was published in Parkinson’s Disease.
A long-term progressive disease, Parkinson’s requires that patients and the people caring for them develop skills and coping mechanisms in order to best deal with its physical and emotional changes over time.
“The NPS promotes awareness of thoughts, feelings, and actions in relation to the impact of disease on daily life and introduces techniques of self-monitoring in order to provide the knowledge and tools needed to enhance the ability to live and handle life with the disease,” the researchers wrote. “It does not primarily focus on the disease itself, but on how to live a good life in the presence of disease.”
The program consists of seven, two-hour sessions, where people with Parkinson’s and their care partners come together in a small group with a qualified instructor — a health care professional who is trained to deliver the program and has experience working with Parkinson’s.
Each session, which ends with a 15-minute relaxation exercise, focuses on a specific topic, including “self-monitoring,” “stress,” “anxiety and depression,” “communication,” “enriching activities,” and “my future life with Parkinson’s disease.”
These topics are “then applied to the participants’ own life situation through practical exercises and homework assignments,” the study notes.
Researchers evaluated NPS in terms of how it affected quality of life, looking at data collected on 48 patients and 30 of their caregivers, after going through the seven-week program. For comparison, they also assessed 44 patients and 25 caregivers who underwent seven weeks of standard care for Parkinson’s. Possible confounding factors — such as familial deaths or births — were similar in both groups.
Participants were given a battery of questionnaires before and after their respective seven-week intervention.
Among patients, those who completed the NPS showed significant improvements on two measures of health-related quality of life: average scores on the Parkinson’s Disease Questionnaire 8 (PDQ-8; higher scores indicate poorer quality) decreased from 28.1 to 23.4. Average scores on the EQ-5D, where higher scores indicate better quality, increased from 0.87 to 0.88. Other measures showed similar trends, but differences were not statistically significant.
In contrast, among patients who received standard of care, scores tended to indicate a worsening quality of life after seven weeks. Decreasing scores (indicating poorer quality) were statistically significant for three subdomains of the 11-item Life Satisfaction Checklist (LiSat-11): satisfaction with life as a whole, leisure, and contacts.
Prior to the intervention, some scores among standard care patients were also significantly higher (implying better quality) than those of the NPS group — namely, the LiSat11 satisfaction with life, as well as some domains of the Health Education Impact Questionnaire. Afterward, these differences were again no longer significant.
No statistically significant changes in questionnaire scores among caregivers who completed the NPS were seen; scores tended to be stable or to increase slightly. For caregivers in the standard of care group, scores tended to be stable or worsen, and there were statistically significant drops in scores for life satisfaction as a whole on the LiSat-11 checklist.
NPS participants also answered a questionnaire evaluating the program itself. Overall, both patients and their caregivers reported high satisfaction.
“For example,” the researchers wrote, “both PwPD [people with Parkinson’s disease] and care partners agreed that participating in the NPS was worthwhile, that its content was relevant, and that their understanding of PD had improved.”
Results are “encouraging” and show “the programme can improve health and the skills required to handle disease and manage symptoms in everyday life and can strengthen the mindset of persons affected by PD of being in charge and not allowing disease to control life,” the researchers concluded.
“The NPS should therefore be offered as an integrated part of a holistic person-centred standard care, and resources should be allocated for the provision of the programme,” they added.
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