Objective: Individuals with cancer experience the impact of chemotherapy on hair loss in different ways. The aim of this pilot study was to explore patients' experiences of alopecia through... Show moreObjective: Individuals with cancer experience the impact of chemotherapy on hair loss in different ways. The aim of this pilot study was to explore patients' experiences of alopecia through patients' drawings. Methods: Fifteen female patients diagnosed with cancer and treated with chemotherapy were recruited at the oncological day-care unit of a teaching hospital in the Netherlands. Participants completed a semi-structured interview about alopecia. They drew their head and hair before and during chemotherapy and completed the Brief Illness Perception Questionnaire (B-IPQ).Results: The drawings revealed predominantly physical effects, rather than emotions. Emotions were evident in the text that patients wrote under the drawings and in the B-IPQ open question about the perceived consequences of alopecia. The overall impact of alopecia that emerged from the drawings and the B-IPQ corresponded to the information retrieved from the interviews, namely disappointment, insecurity, sadness, and confrontation.Conclusions: Drawings expose cognitive and emotional responses to alopecia that may be relatively unexplored when using traditional assessment methods such as questionnaires or interviews. In future research, the drawing instructions need to be more specifically focused on feelings in order to better capture emotional reactions to hair loss. Show less
Recent research has examined patients' drawings of their illness as a means to identify patients' illness representations. The aim of this systematic review was to examine which representations are... Show moreRecent research has examined patients' drawings of their illness as a means to identify patients' illness representations. The aim of this systematic review was to examine which representations are evident in patients' drawings, and whether drawing assessments are associated with patient outcomes. Ten electronic databases were searched for published journal papers in English up to 1 July 2017. Narrative synthesis summarised findings by participant characteristics, study design, illness representations, and associations with outcomes. There were 101 eligible studies, published across 29 different countries, with 27 different disease categories; 54 of the studies were with adults and 80 were cross-sectional. All core illness perception domains were evident; the most common being identity and related concepts (including symptoms, anatomy, pathophysiology), and emotional representations (including fear, denial, stigma). Perceptions of treatment and the clinical and social environment were evident. More organ damage drawn and larger drawing size were associated with worse perceptions and health outcomes, and drawings distinguished between patient groups. Limitations include the inability to conduct meta-analysis. In conclusion, patients' drawings reveal additional domains of illness representations, specifically perceptions of pathophysiology, treatment and social environments, as well as illness pre-occupation. These findings expand theories of self-regulation and suggest image-based intervention strategies. Show less
People with pituitary disease report impairments in quality of life. The aim of this study was to elucidate the impact of the pituitary condition on the lives of partners. Four focus groups of... Show morePeople with pituitary disease report impairments in quality of life. The aim of this study was to elucidate the impact of the pituitary condition on the lives of partners. Four focus groups of partners of people with pituitary disease (Cushing's disease, non-functioning adenoma, acromegaly, prolactinoma) were conducted. Partners mentioned worries related to the pituitary disease and negative beliefs about medication, coping challenges, relationship issues, social issues and unmet needs regarding care. This study emphasizes the importance of not only paying attention to psychosocial well-being of people with pituitary disease but also to their partners. Show less
Conclusions The LBNQ-Pituitary can be used to assess the degree to which patients are bothered by the consequences of the pituitary disease, as well as their needs for support. It could also... Show moreConclusions The LBNQ-Pituitary can be used to assess the degree to which patients are bothered by the consequences of the pituitary disease, as well as their needs for support. It could also facilitate an efficient assessment of patients' needs for support in clinical practice. We postulate that paying attention to needs for support will lead to optimal patient care (e.g., improvement in psychosocial care), and positively affect QoL. Show less
Nowadays, pituitary adenomas can be appropriately treated, but patients continue to report impaired quality of life (QoL) despite long-term remission or cure. In patients with Cushing__s disease,... Show moreNowadays, pituitary adenomas can be appropriately treated, but patients continue to report impaired quality of life (QoL) despite long-term remission or cure. In patients with Cushing__s disease, Cushing__s syndrome or acromegaly, doctors should be aware of subtle cognitive impairments and the increased prevalence of psychopathology and maladaptive personality traits after long-term remission. In addition, these patients use ineffective coping strategies and have negative illness perceptions that are not always correct. Patients are labeled __cured__, but still experience chronic and persisting impairments due to their pituitary disease. Doctors should consider informing patients better about the long-term consequences and act as a guide in this __acceptance process__ of the patient. In addition, a multi-disciplinary team of endocrinologists, psychologists, and community health workers might also help patients in accepting and dealing with the consequences of their pituitary disease. Show less