Exploring the influence of Parkinson's disease on relationship quality

The aim of this project was to explore how clinical variables affect patients with Parkinson’s disease and their partners’ relationship quality, health-related quality of life (HRQoL), and caregiver burden. Fifty-one dyads who had been living together for more than 3 years and aged >55 years were included. Data on motor, non-motor symptom (NMS), relationship quality (mutuality), cognitive decline, activities in daily life (ADL), caregiver burden, and HRQoL were collected.

In study 1, psychometric testing of the translated Swedish version of the mutuality scale (MS) showed that the scale by patients and partners demonstrated high internal consistency (α ≥0.93) and no floor-ceiling effect. Our findings suggest that the Swedish MS is a user-friendly and useful instrument with acceptable psychometric properties. However, more research is warranted regarding the existence of subscales. Study 2 explores if 1) perceived mutuality by patients and partners differs 2) different factors are associated with patients’ and partners’ mutuality 3) mutuality is associated with patients’ HRQoL and caregiver burden. Our result showed that the dyad rated their own mutuality as high with no differences in total scores. The findings suggest that NMS and high perceived mutuality by the patients are associated with their own HRQoL. High perceived mutuality by partners is associated with caregiver burden. Partners’ mutuality was a dominant contributor to patients’ mutuality and vice versa. In general, it seems like NMS and mutuality contribute to a larger extent to the deterioration of HRQoL and caregiver burden than motor disabilities. Study 3 explores if mutuality acts as mediator between clinical variables and patients’ HRQoL. Our main findings suggest that when motor disability and NMS are present in everyday/care situations, patients’ HRQoL deteriorates because patients’ mutuality suffers. Study 4 explores if mutuality acts as mediator between clinical variables and caregiver burden. The main findings suggest, that when dependency in ADL or decline in cognitive function is present in everyday/care situations, caregiver burden increases because partners’ mutuality suffers.

List of scientific papers

I. Karlstedt M, Fereshtehnejad SM, Winnberg E, Aarsland D, Lokk J. Psychometric properties of the mutuality scale in Swedish dyads with Parkinson's disease. Acta neurologica Scandinavica. 2017;136(2):122-8.
https://doi.org/10.1111/ane.12706

II. Karlstedt M, Fereshtehnejad SM, Aarsland D, Lokk J. Determinants of Dyadic Relationship and Its Psychosocial Impact in Patients with Parkinson's Disease and Their Spouses. Parkinsons Disease. 2017;9.
https://doi.org/10.1155/2017/4697052

III. Michaela Karlstedt, Seyed-Mohammad Fereshtehnejad, Dag Aarsland, and Johan Lökk, Mediating Effect of Mutuality on Health-Related Quality of Life in Patients with Parkinson’s Disease. Parkinson’s Disease. 2018, Article ID 9548681.
https://doi.org/10.1155/2018/9548681

IV. Michaela Karlstedt, Seyed-Mohammad Fereshtehnejad, Dag Aarsland, and Johan Lökk. Mediating Effect of Mutuality on Caregiver burden in Parkinson’s disease partners. [Submitted]