Patient needs in advanced Renal Cell Carcinoma: What are patients’ priorities and how well are we meeting them?

Treatment options and duration of therapy for patients with metastatic renal cell carcinoma (mRCC) have increased. Many patients now spend in excess of 2 years on active therapy. These patients’ needs, and the ability of health services to respond to them, are poorly understood. Ten patients living...

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Autores principales:	Rick Harris, Kate Oake, Robert Hawkins, Robert Jones, Thomas Powles, David Montgomery
Formato:	article
Lenguaje:	EN
Publicado:	The Beryl Institute 2015
Materias:	metastatic renal cancer interpretative phenomenological analysis ipa patient experience voice of patient service improvement service delivery Medicine (General) R5-920 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/86c07aa0dc4446b4bad3b04f662880d1
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spelling	oai:doaj.org-article:86c07aa0dc4446b4bad3b04f662880d12021-11-15T04:21:32ZPatient needs in advanced Renal Cell Carcinoma: What are patients’ priorities and how well are we meeting them?2372-0247https://doaj.org/article/86c07aa0dc4446b4bad3b04f662880d12015-11-01T00:00:00Zhttps://pxjournal.org/journal/vol2/iss2/18https://doaj.org/toc/2372-0247Treatment options and duration of therapy for patients with metastatic renal cell carcinoma (mRCC) have increased. Many patients now spend in excess of 2 years on active therapy. These patients’ needs, and the ability of health services to respond to them, are poorly understood. Ten patients living with mRCC for more than 2 years and treated with at least one targeted agent were selected at random from three hospitals in the United Kingdom (UK). One interviewer who was not involved in their care conducted in-depth interviews. Interview transcripts were analysed using Interpretative Phenomenological Analysis (IPA) to identify issues of greatest importance to patients, and to understand how well patients felt their needs were being addressed. Perceived delay in initial diagnosis was a major theme. Being told the truth about treatment side effects upfront was important, but was often at odds with perceived delivery. ‘Dealing with side effects’, understanding dose and its effects and not letting ‘negative thoughts get in’ were highlighted as important, but were highly personal to patients and areas where patients struggled. Concordance was observed with delivery of ‘a clear next step’ for treatment, timely access to drugs and guidance on a drug ‘holiday’. Patient experience of mRCC and its treatment requires a tailored approach. This research suggests there are key opportunities for service improvement and improved communication throughout the pathway to better meet the needs of patients, including non-clinical support to build personal resilience.Rick HarrisKate OakeRobert HawkinsRobert JonesThomas PowlesDavid MontgomeryThe Beryl Institutearticlemetastatic renal cancerinterpretative phenomenological analysisipapatient experiencevoice of patientservice improvementservice deliveryMedicine (General)R5-920Public aspects of medicineRA1-1270ENPatient Experience Journal (2015)
institution	DOAJ
collection	DOAJ
language	EN
topic	metastatic renal cancer interpretative phenomenological analysis ipa patient experience voice of patient service improvement service delivery Medicine (General) R5-920 Public aspects of medicine RA1-1270
spellingShingle	metastatic renal cancer interpretative phenomenological analysis ipa patient experience voice of patient service improvement service delivery Medicine (General) R5-920 Public aspects of medicine RA1-1270 Rick Harris Kate Oake Robert Hawkins Robert Jones Thomas Powles David Montgomery Patient needs in advanced Renal Cell Carcinoma: What are patients’ priorities and how well are we meeting them?
description	Treatment options and duration of therapy for patients with metastatic renal cell carcinoma (mRCC) have increased. Many patients now spend in excess of 2 years on active therapy. These patients’ needs, and the ability of health services to respond to them, are poorly understood. Ten patients living with mRCC for more than 2 years and treated with at least one targeted agent were selected at random from three hospitals in the United Kingdom (UK). One interviewer who was not involved in their care conducted in-depth interviews. Interview transcripts were analysed using Interpretative Phenomenological Analysis (IPA) to identify issues of greatest importance to patients, and to understand how well patients felt their needs were being addressed. Perceived delay in initial diagnosis was a major theme. Being told the truth about treatment side effects upfront was important, but was often at odds with perceived delivery. ‘Dealing with side effects’, understanding dose and its effects and not letting ‘negative thoughts get in’ were highlighted as important, but were highly personal to patients and areas where patients struggled. Concordance was observed with delivery of ‘a clear next step’ for treatment, timely access to drugs and guidance on a drug ‘holiday’. Patient experience of mRCC and its treatment requires a tailored approach. This research suggests there are key opportunities for service improvement and improved communication throughout the pathway to better meet the needs of patients, including non-clinical support to build personal resilience.
format	article
author	Rick Harris Kate Oake Robert Hawkins Robert Jones Thomas Powles David Montgomery
author_facet	Rick Harris Kate Oake Robert Hawkins Robert Jones Thomas Powles David Montgomery
author_sort	Rick Harris
title	Patient needs in advanced Renal Cell Carcinoma: What are patients’ priorities and how well are we meeting them?
title_short	Patient needs in advanced Renal Cell Carcinoma: What are patients’ priorities and how well are we meeting them?
title_full	Patient needs in advanced Renal Cell Carcinoma: What are patients’ priorities and how well are we meeting them?
title_fullStr	Patient needs in advanced Renal Cell Carcinoma: What are patients’ priorities and how well are we meeting them?
title_full_unstemmed	Patient needs in advanced Renal Cell Carcinoma: What are patients’ priorities and how well are we meeting them?
title_sort	patient needs in advanced renal cell carcinoma: what are patients’ priorities and how well are we meeting them?
publisher	The Beryl Institute
publishDate	2015
url	https://doaj.org/article/86c07aa0dc4446b4bad3b04f662880d1
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Patient needs in advanced Renal Cell Carcinoma: What are patients’ priorities and how well are we meeting them?

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