The pre- and postoperative illness trajectory in patients with pituitary tumours

Abstract

Objective Experiences and need of support during surgery and start of replacement therapy in patients with pituitary tumours are highly unknown. This study aimed at exploring patient experiences during pre- and postoperative care and recovery after pituitary surgery in patients with a pituitary tumour. Methods Within a qualitative study design, 16 consecutive patients who underwent surgery for pituitary tumours were repeatedly interviewed. In total, 42 interviews were performed before and after surgery. Analysis was performed using qualitative interpretation. Results Suffering a pituitary tumour was overwhelming for many patients and struggling with existential issues was common. Patients expressed loneliness and vulnerability before and after surgery. How professionals handled information in connection with diagnosis greatly affected the patients. Other patients with the same diagnosis were experienced as the greatest support. Normalisation of bodily symptoms and relationships with others were reported during postoperative recovery. However, a fear that the tumour would return was present. Conclusions Patients with pituitary tumours need structured support, including peer support, which acknowledges physical, cognitive as well as emotional and existential concerns. Information related to diagnosis and surgery should be adapted in relation to the loneliness and the existential seriousness of the situation. Care and support for patients with pituitary tumours should preferably be organised based on continuity and an unbroken care pathway from the first pre-operative evaluation through to postoperative care and the start of a life-long endocrine treatment and tumour surveillance.

Las tensiones de los modelos de atención a la salud en las trayectorias de padecimiento de personas con factores de riesgo para enfermedades crónicas no transmisibles

“…Este entra en conflicto con la cronicidad de los padecimientos en cuestión que requieren la puesta en marcha de otras acciones (23). En contraposición, en otras investigaciones (24 -26) también se observaron los beneficios de la lógica preventivo-promocional y la incorporación de la ayuda mutua. La posibilidad de reconocerse en los relatos que aportan otras personas con el mismo padecimiento permite la construcción de lo común, favoreciendo prácticas de cuidado colectivas, basadas en la promoción de la salud, la escucha y el acompañamiento entre pares.…”

“…Respecto de la relación entre el/la profesional de la salud y el/la paciente, otros estudios también evidenciaron la importancia de construir relaciones de cooperación que sean capaces de incluir aspectos biográficos de la experiencia del padecimiento y estén basadas en el respeto, la escucha y la sensibilidad (14,26,27). Asimismo, se ha documentado que las prácticas de cuidado que llevan adelante las personas con enfermedades crónicas entrec-ruzan recomendaciones médicas, preferencias y posibilidades personales (7,24).…”

Extended Support Within a Person-Centered Practice After Surgery for Patients With Pituitary Tumors: Protocol for a Quasiexperimental Study

“…The project addresses the effects of extended support from surgery to the start of lifelong endocrine treatment and tumor surveillance for patients with pituitary tumors. The year after pituitary surgery constitutes an important time period, with medical evaluations of surgery and decisions on hormonal substitution, all resulting in a critical time for the patients [ 44 ].…”

The importance of personal documentation for patients living with long‐term illness symptoms after pituitary surgery: A Constructivist Grounded Theory study

“…Pituitary adenomas are rare 1 , 2 but can entail a heavy symptom burden and a chronic illness course despite surgical treatment. 3 , 4 Long‐term illness symptoms can vary significantly between patients depending on the type of adenoma. 3 Patients with acromegaly typically develop progressive changes in facial appearance and growth of the hands, feet and internal organs.…”

“…Patients report work and social problems, including changes in social functioning, adverse effects of the illness on personal relationships, reduced social networks and a general lack of sympathy and support. 4 , 10 …”