Patient-reported experience in lung and breast cancer through a patient journey.

OBJECTIVE: To analyse a patient journey based on the experience reported by  breast and lung cancer patients at Spanish hospital. Method: A mixed design was used, with interviews with 16 health  professionals and 25 patients (qualitative method) and a Net Promoter Score questionnaire to 127 patients (quantitative method). INCLUSION CRITERIA: oncology patients > 18 years treated in hospital between February-  May 2019. EXCLUSION CRITERIA: paediatric patients, in palliative care or who were  hospitalised at the time of the study. RESULTS: Six phases were identified from the data obtained in the qualitative method: my life before diagnosis; discovery; initiation; treatment;  followup; and my current life. In the my life before diagnosis phase, a  functional level of experience was established, as patients' lives met their  expectations. In the discovery phase, patients' expectations were observed to  be met, although several satellite experiences were found. In the initiation  phase, the experience tended to be negative due to long waiting times and  emotional and physical stress. The treatment phase was defined as a basic- poor experience, due to waiting times and lack of institutional support. The  experience in the follow-up phase was positive in terms of tests and visits, but  critical points were observed in waiting times. In the current phase, the effort  made by health professionals to ensure the best possible treatment and care  was mentioned. In terms of quantitative analysis, a positive score (46%) was obtained for the Net Promoter Score indicator, as 60% of patients were promoters, i.e. they were satisfied with the service offered by the hospital. CONCLUSIONS: This study provides insight into the experience of cancer patients in the six main stages of the disease. The most positive phases were "my life before diagnosis" and "follow-up" while the phases with a negative trend were "initiation" and "treatment" due to the waiting times  and the emotional burden on the patient.

OBJETIVO: Analizar la experiencia aportada por los pacientes con cáncer de  mama y pulmón utilizando la metodología del recorrido del paciente en un  hospital español. Método: Se empleó un diseño mixto, con entrevistas a 16 profesionales sanitarios y 25 pacientes (método cualitativo), y un cuestionario  basado en el indicador Net Promoter Score a 127 pacientes (método  cuantitativo). Criterios de inclusión: pacientes oncológicos > 18 años tratados  en el hospital entre febrero y mayo de 2019. Criterios de exclusión: pacientes pediátricos, en cuidados paliativos o que estaban hospitalizados en el  momento del estudio. RESULTADOS: Se identificaron seis fases a partir de los datos obtenidos en  el  método cualitativo: mi vida antes del diagnóstico, descubrir, comenzar, tratamiento, seguimiento y mi vida hoy. En la fase mi vida antes del  diagnóstico se estableció un nivel de experiencia funcional, ya que la vida  cumplía las expectativas de los pacientes. En la fase de descubrir se observó  que las expectativas de los pacientes se cumplían, aunque se  encontraron varias experiencias satélite. En la fase comenzar, la experiencia  tendió a ser negativa debido a los largos tiempos de espera y al estrés  emocional y físico. La fase de tratamiento se consideró como una experiencia  de nivel básico-deficiente, debido a los tiempos de espera y a la falta de apoyo  institucional. La experiencia en la fase de seguimiento fue positiva respecto   las pruebas y las visitas, pero se observaron puntos críticos en los tiempos de espera. en la fase mi vida hoy se mencionó el esfuerzo realizado  por  los profesionales sanitarios para garantizar el mejor tratamiento y  atención posibles. En cuanto al análisis cuantitativo, se obtuvo una puntuación positiva (46%) para el indicador Net Promoter Score, ya que el 60% de los  pacientes pertenecían a la categoría de promotores, es decir, estaban satisfechos con el servicio ofrecido por el hospital. CONCLUSIONES: Este estudio permite conocer la experiencia de los pacientes  oncológicos en las seis etapas principales de la enfermedad. Las fases más  positivas fueron "mi vida antes del diagnóstico" y "seguimiento", mientras que  las fases con tendencia negativa fueron "inicio" y "tratamiento" debido a los  tiempos de espera y la carga emocional que suponen para el paciente.

Defining a Standard Set of Patient-Reported Outcomes for Patients With Advanced Ovarian Cancer.

Purpose: Advanced ovarian cancer (AOC) and its treatment cause several symptoms and impact on patients' health-related quality of life (HRQoL). We aim to reach a consensus on the most relevant patient-reported outcome (PROs), the corresponding measures (PROMs), and measurement frequency during AOC patients' follow-up from patients' and healthcare professionals' (HCP) perspective. Methods: The project comprised five steps: 1) a literature review, 2) a focus group with patients, 3) a nominal group with HCP, 4) two round-Delphi consultations with patients and HCP, and 5) a final meeting with HCP. Delphi questionnaire was elaborated based on literature review, focus group (n=5 patients), and nominal group (n=16 HCP). The relevance of each PRO and the appropriateness (A) and feasibility (F) of the proposed PROM were assessed (Likert scale 1=strongly agree; 9=strongly disagree). The consensus was reached when at least 75% of the panelists rated it as 'relevant', 'appropriate', or 'feasible' (score 7-9). Results: A total of 56 HCP [51.8% Hospital Pharmacy; 41.1% Oncology; 3.6% Nursing; and 3.6% Psycho-oncology; mean time in specialty 12.5 (8.0) years] and 10 AOC patients [mean time diagnosis 5.4 (3.0) years] participated in the 1st round. All PROs achieved consensus regarding their relevance, except dry skin (58.0%). Agreement was reached for PRO-CTCAE to be used to assess fatigue (A:84.9%; F:75.8%), neuropathy (A:92.4%; F:77.3%), diarrhea (A:87.9%; F:88.7%), constipation (A:86.4%; F:75.8%), nausea (A:89.4%; F:75.8%), insomnia (A:81.8%; F:88.7%), abdominal bloating (A:82.2%; F:82.2%) and sexuality (A:78.8%; F:88.6%); EQ-5D to determine patients' HRQoL (A:87.9%; F:80.3%), pain (A:87.9%; F:75.8%) and mood (A:77.7%; F:85.5%); to assess treatment adherence the Morisky-Green (A:90.9%; F:84.9%) and the dispensing register (A:80.3%; F:80.3%) were chosen. It was agreed to note in the medical record whether the patient's treatment preferences had been considered during decision-making (A:78.8%; F:78.8%) and to use a 5-point Likert scale to assess treatment satisfaction (A:86.4%; F:86.4%). Panelists agreed (A:92.4%; F: 77.3%) to collect these PROs (1) at the time of diagnosis/relapse; (2) one month after starting treatment/change therapeutic strategy; (3) every three months during the 1st-year of treatment; and later (4) every six months until treatment completion/change. Conclusions: The consensus reached represents the first step towards including the patient's perspective in AOC follow-up. The standardized collection of PROs in clinical practice may contribute to optimizing the follow-up of these patients and thus improving the quality of care.