The Voice of the Parkinson Customer

Effects of self‐management education for persons with Parkinson's disease and their care partners: A qualitative observational study in clinical care

“…These symptoms are often difficult to treat with medications, and PwPD as well as the family need to find ways to adapt to and cope with these changes caused by the disease (Berger et al, 2017; Sjödahl Hammarlund et al, 2018; Kleiner‐Fisman, Gryfe, & Naglie, 2013). Previous studies have also identified wishes and unmet needs for PwPD and care partners for emotional support, as well as strategies to cope with these aspects of disease in medical care (Kleiner‐Fisman et al, 2013; Hellqvist & Berterö, 2015; Vlaanderen et al, 2019; Van der Eijk, Faber, Al, Munneke, & Bloem, 2011). The NPS includes strategies to handle emotional strain caused by PD and this could be one intervention offered by health care to address these unmet needs.…”

“…Although PwPD need regular health care visits, including evaluation of symptoms and adjustment of medical treatment the majority of care and management of disease is performed by the person themselves and their family in in everyday life (Baudet et al, 2015; Lageman, Mickens, & Cash, 2015). PwPD and their care partners want help and support from health care in order to develop emotional, cognitive, and practical skills to handle everyday life and maintain life satisfaction (Berger et al, 2017; Sturm, Folkerts, & Kalbe, 2019; Vlaanderen et al, 2019).…”

Multidisciplinary care for people with Parkinson’s disease: the new kids on the block!

“…Work outside the field of PD has shown that many patients are able to participate in even complex decisions, helping them to receive care tailored to their own specific needs, and in fact also to help contain costs [19]. Also, recent work has shown the value of using deep interviewing methods to arrive at the core wishes and needs of patients, as a basis for the necessary innovations in healthcare [20]. We have even argued that in this new world of participatory medicine, the name "patient" has become outdated, as it is derived from the Latin word "patientia" that signifies suffering or patience [21].…”

Introductory Chapter: Targeting Unmet Needs in Parkinson’s Disease

“…It is proposed this year an interesting approach called the "Voice of the Costumer" [7], which includes three successive phases of gathering information on the real needs due to the experience of the disease: (1) capturing patient needs by means of semi-structured interviews with patients, relatives, and healthcare providers in their private environment; (2) preparing a comprehensive summary of the contents discussed in the interviews; and (3) prioritizing needs in a consensus meeting, in which all parties participate. Vlaanderen and collaborators [7] suggested that patients were more concerned about the impact of PD on their daily lives than about the bio-medical aspects of the disease.…”

“…It is proposed this year an interesting approach called the "Voice of the Costumer" [7], which includes three successive phases of gathering information on the real needs due to the experience of the disease: (1) capturing patient needs by means of semi-structured interviews with patients, relatives, and healthcare providers in their private environment; (2) preparing a comprehensive summary of the contents discussed in the interviews; and (3) prioritizing needs in a consensus meeting, in which all parties participate. Vlaanderen and collaborators [7] suggested that patients were more concerned about the impact of PD on their daily lives than about the bio-medical aspects of the disease. The authors have found that top unmet needs of the parties involved were: more self-management; better interdisciplinary collaboration between different healthcare professionals; more time to discuss the future and possible scenarios; and a healthcare professional acting as a single point of access, acting as personal case manager, either to solve problems directly or to direct patients to the professional best equipped to address the problem at hand.…”