Comparing patients' perspectives of "good care" in Dutch outpatient psychiatric services with academic perspectives of patient-centred care.

BACKGROUND: Over the past six decades, the concept of patient-centred care (PCC) has been discussed in health research, policy and practice. However, research on PCC from a patients' perspective is sparse and particularly absent in outpatient psychiatric services. AIM: to gain insight into what patients with bipolar disorder and ADHD consider "good care" and what this implies for the conceptualisation of PCC. METHOD: A literature review on the different conceptualisations of PCC was complemented with qualitative explorative research on the experiences and needs of adults with ADHD and with bipolar disorder with mental healthcare in the Netherlands using focus group discussions and interviews. RESULTS: The elements addressed in literature are clustered into four dimensions: "patient", "health professional", "patient-professional interaction" and "healthcare organisation". What is considered "good care" by patients coincided with the four dimensions of PCC found in literature and provided refinement of, and preferred emphasis within, the dimensions of PCC. CONCLUSIONS: This study shows the value of including patients' perspectives in the conceptualisation of PCC, adding elements, such as "professionals listen without judgment", "professionals (re)act on the fluctuating course of the disorder and changing needs of patients" and "patients are seen as persons with positive sides and strengths".

A research agenda for bipolar disorder developed from a patients' perspective.

BACKGROUND: Diagnosis and treatment of bipolar disorder is complex. Health care is supported by clinical guidelines, which are highly based on scientific evidence. However, such care does not necessarily correspond to preferred care according to patients. In order to narrow the gap between scientifically based guidelines and the patient's perceptions of the best clinical practice, additional research is needed. The aim of this study was to create a patient based research agenda for bipolar disorder to enhance the alignment between patients' needs and care system. METHODS: A mixed method study design was employed consisting of two phases: consultation and prioritization. In the consultation phase, six focus group discussions with patients (n = 35) were conducted to explore research needs according to patients, resulting in 23 research topics. Subsequently, these topics were prioritized by means of a questionnaire with patients (n = 219). RESULTS: Patients with bipolar disorder mentioned a variety of research topics covered by the following five themes: causes of disorder; pharmacotherapy; non-pharmacological treatment; diagnosis; and recovery & recovery oriented care. 'Etiology' was the topic with highest priority. DISCUSSION: The theme 'causes of disorder' is prioritized highest. We argue that this can be explained by the added value of an explanatory framework for appropriate treatment and recovery. The theme 'recovery & recovery oriented care' is currently underrepresented in actual research. It is argued that in order to bridge the knowledge and implementation gap, social science and health system research is needed in addition to biomedical research.

The challenges of living with bipolar disorder: a qualitative study of the implications for health care and research.

BACKGROUND: In mental health care, clinical practice is often based on the best available research evidence. However, research findings are difficult to apply to clinical practice, resulting in an implementation gap. To bridge the gap between research and clinical practice, patients' perspectives should be used in health care and research. This study aimed to understand the challenges people with bipolar disorder (BD) experience and examine what these challenges imply for health care and research needs. METHODS: Two qualitative studies were used, one to formulate research needs and another to formulate healthcare needs. In both studies focus group discussions were conducted with patients to explore their challenges in living with BD and associated needs, focusing on the themes diagnosis, treatment and recovery. RESULTS: Patients' needs are clustered in 'disorder-specific' and 'generic' needs. Specific needs concern preventing late or incorrect diagnosis, support in search for individualized treatment and supporting clinical, functional, social and personal recovery. Generic needs concern health professionals, communication and the healthcare system. CONCLUSION: Patients with BD address disorder-specific and generic healthcare and research needs. This indicates that disorder-specific treatment guidelines address only in part the needs of patients in everyday clinical practice.