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In Their Own Words: A Qualitative Descriptive Study of Patient and Caregiver Perspectives on Follow-Up Care after Palliative Radiotherapy

Published:March 07, 2013DOI:https://doi.org/10.1016/j.jmir.2013.01.001

      Abstract

      Purpose

      To explore patients’ and caregivers’ views on follow-up care after palliative radiotherapy.

      Methodology

      A qualitative study design was used. Patients receiving palliative radiotherapy or their caregivers were eligible to participate following informed consent. Participants attended a single interview. The interviews were guided by a set of open-ended questions designed to explore the participants’ understanding of the purpose and preference for follow-up care after palliative radiotherapy. Interviews were recorded and transcribed verbatim. Themes were identified in the transcripts and described with consideration of the individual participant’s demographics and cancer experiences.

      Results

      Nine participants (five patients and four caregivers) of eleven approached consented, and were interviewed. The median age of the participants was 60 years (range, 47–80 years). All participants had an Eastern Cooperative Oncology Group performance status of ≤1. Median time from the patient’s initial cancer diagnosis to the study interview was 4.5 years (range, 3–35 years). Follow-up appointments were expected to provide an evaluation of treatment outcomes, complications, and current situations. Scheduled appointments were appreciated by some as they provided a dedicated opportunity to ask questions of their health care team. The receiving radiation oncology team’s contact information was felt to be helpful because the patients could ask treatment-related questions. Many participants were comfortable with and expected the medical oncologist or referral physician to provide follow-up care for patients who received palliative radiotherapy.

      Conclusions

      Palliative patients have diverse physical and emotional care needs. Within this study sample, participants valued follow-up because it provided an evaluation of their clinical status. They also viewed their established primary oncologist as the most appropriate person to provide follow-up care, supplemented by an efficient way of contacting their radiation oncology team as needed.

      Résumé

      Objectif

      Explorer les opinions des patients et des soignants sur les mesures de suivi après la radiothérapie palliative.

      Méthodologie

      On a utilisé un modèle d’étude qualitative. Les patients qui recevaient de la radiothérapie palliative ou leurs soignants étaient invités à participer à l’étude après y avoir consenti en toute connaissance de cause. Ils étaient interviewés une seule fois. Les interviews reposaient sur des questions ouvertes visant à explorer la compréhension des participants des buts et des préférences en matière de suivi à une radiothérapie palliative. Les interviews ont été enregistrées et transcrites mot à mot. Les thèmes abordés ont été extraits des transcriptions et décrits en fonction des données démographiques des participants et de leur expérience du cancer.

      Résultats

      9 participants (5 patients et 4 soignants) sur 11 ont consenti à être interviewés. L’âge moyen des participants était de 60 ans (écart: 47–80). Tous les participants avaient un indice de performance ECOG ≤1. Le temps moyen écoulé entre le diagnostic initial du patient et le moment de l’interview était de 4,5 ans (écart: 3–35). On s’attendait à ce que les rendez-vous de suivi donnent lieu à une évaluation des résultats du traitement, des complications et de l’état actuel. Certains des participants ont apprécié les rendez-vous puisqu’ils offraient l’occasion de poser des questions à leur équipe de soins de santé. Les patients ont jugé utile de recevoir les coordonnées de l’équipe d’oncologie parce qu’ils pouvaient alors poser directement leurs questions sur le traitement. De nombreux participants s’attendaient à ce que l’oncologue ou le médecin orienteur assurent le suivi des patients qui avaient reçu de la radiothérapie palliative et étaient à l’aise avec cette idée.

      Conclusion

      Les patients en traitements palliatifs éprouvent divers besoins physiques et émotifs. Dans l’échantillonnage examiné, les participants ont apprécié le suivi parce qu’il offre une évaluation de leur état clinique. Ils estimaient aussi que leur principal oncologue était la personne la mieux placée pour assurer le suivi tout en appréciant le fait qu’ils pouvaient communiquer avec leur équipe de traitement de radio-oncologie au besoin.

      Introduction

      Follow-up visits are frequently scheduled after palliative radiotherapy by various members of the health care team [

      National Cancer Institute. Follow-up Care After Cancer Treatment. May 17, 2010. Available at: http://www.cancer.gov/cancertopics/factsheet/Therapy/followup. Accessed November 1, 2010.

      ]. These appointments can be described as encounters where a health care provider meets with the patient following a previous episode of clinical care. Traditionally, these appointments serve as a platform for the health care provider to evaluate treatment outcome, identify and manage treatment side effects, and provide advice on the patient’s current care plan. They also serve as an opportunity for patients to receive feedback on treatment effectiveness, side-effect management, and psychosocial support.
      Studies have determined that a patient’s needs vary after a long cancer trajectory [
      • Wong R.K.
      • Franssen E.
      • Szumacher E.
      • et al.
      What do patients living with advanced cancer and their carers want to know?—a needs assessment.
      ,
      • Bakker M.
      • Weug D.
      • Crommelin M.
      • Lybeert M.
      Information for the radiotherapy patient.
      ,
      • Pituskin E.
      • Fairchild A.
      • Dutka J.
      • et al.
      Multidisciplinary team contributions within a dedicated outpatient palliative radiotherapy clinic: a prospective descriptive study.
      ]. When those needs were identified and addressed, the patient’s general condition would improve [
      • Pituskin E.
      • Fairchild A.
      • Dutka J.
      • et al.
      Multidisciplinary team contributions within a dedicated outpatient palliative radiotherapy clinic: a prospective descriptive study.
      ]. Depending on the patient’s medical history, performance status, and personal wishes, follow-up arrangements after palliative radiotherapy can be extensive or minimal [

      National Cancer Institute. Follow-up Care After Cancer Treatment. May 17, 2010. Available at: http://www.cancer.gov/cancertopics/factsheet/Therapy/followup. Accessed November 1, 2010.

      ]. Moreover, follow-up arrangements are often made by various health care teams and can be markedly different in approach [
      • Bezjak A.
      • Kirkbride P.
      • Wong R.
      Palliative Radiation Therapy.
      ]. Unfortunately, there are no proven metrics that evaluate the effectiveness of follow-up arrangements for patients receiving palliative radiotherapy. There is also a paucity of information available that illustrates patients’ or their caregivers’ opinions on follow-up care after palliative radiotherapy, although caregivers often become the patient’s advocate as the patient’s condition deteriorates [
      • Weibull A.
      • Olesen F.
      • Neergaard M.A.
      Caregivers’ active role in palliative home care—to encourage or to dissuade? A qualitative descriptive study.
      ].
      A clearer understanding of the needs of patients and caregivers during follow-up is paramount if optimal care is to be provided after palliative radiotherapy. Therefore, this single centre, qualitative descriptive study was designed to explore patient and caregiver perspectives on follow-up care after palliative radiotherapy using semistructured interviews.

      Methods

      This was a single centre, prospective study with local research ethics board approval. A qualitative research paradigm was selected because it would provide insight into the viewpoint and experience of the participants involved [
      • Denscombe M.
      The good research guide for small-scale social research project.
      ]. Unlike a survey or questionnaire, a semistructured interview would prompt the participants to describe their experiences without any directing or suggesting by the investigator [
      • Barriball K.L.
      • While A.
      Collecting data using a semi-structured interview: a discussion paper.
      ]. Response clarification could be requested during the interview to further validate the participants’ lived experience. The data collected would then induce hypothesis generation and promote exploration on the importance of follow-up care after palliative radiotherapy [
      • Denscombe M.
      The good research guide for small-scale social research project.
      ].

       Study Participants

      Eligible study participants were patients, or caregivers of patients, who had received palliative radiotherapy through the Palliative Radiation Oncology Program at Princess Margaret Cancer Centre between March and July 2011. Approximately 200 patients and caregivers were potential candidates during the study accrual period. All candidates who were willing to be interviewed in English were eligible to participate. Candidates who were not fluent in English were encouraged to participate using an interpreter. Candidates were excluded from the study if they did not provide informed consent or if they were deemed medically unfit to participate by their attending radiation oncologist. Potential participants were approached for consent within the patient’s radiation treatment course by an impartial institutional research coordinator to minimize coercion. Candidates were reminded that participation was voluntary and would not influence their care. They were given one day to decide whether they wished to participate in the study. The one-day consent timeline was necessitated by the short course radiotherapy regimen, but this approach was deemed ethically appropriate by the local research ethics board.
      The study was designed so that participant recruitment would stop when the data analysis revealed themes had saturated, or when a maximum of 60 participants had been interviewed within the study period [
      • Sandelowski M.
      Sample size in qualitative research.
      ].

       Data Collection

      Semistructured interviews were conducted with all participants who provided written informed consent. These interviews were designed to explore the participants’ views of follow-up care after palliative radiotherapy. Identifying participants’ views without predetermined categorical constraints described in previous quantitative studies would enable the participants to freely express their underlying needs for and personal expectations of follow-up care [
      • Denscombe M.
      The good research guide for small-scale social research project.
      ,
      • Barriball K.L.
      • While A.
      Collecting data using a semi-structured interview: a discussion paper.
      ].
      Fifteen- to thirty-minute personal interviews were conducted with each participant (ie, patient–caregiver pairs were not interviewed together) in a private consultation room and were scheduled at a mutually agreeable time during the patient’s radiation treatment course. The interviews were conducted during the patient’s treatment course to maximize researchers’ access to potential participants and to minimize the research participation burden imposed on the participants. Reassurance of anonymity was given to participants so they could share candidly in the interview without fear of compromising the patient’s quality of care received. Open-ended questions were used to stimulate conversation and gently guide the interview to explore the participants’ ideas and feelings about the meaning of, experience with, and preference for follow-up care after palliative radiotherapy. The only prepared questions were:Please briefly share your cancer history/experience with me.What happens at these follow-up appointments?Who is the main person/team looking after your (the patient’s) cancer care?How should follow-up care be done after palliative radiotherapy?
      All other questions were derived from the topics brought forth by the participants at the time of the interviews. Response validation was achieved by repeating or rephrasing the question during the interviews.
      The verbal responses from the interviewees were digitally recorded and transcribed verbatim. Nonverbal cues such as intonations and gesturing were noted by the interviewer during the interview and incorporated into the transcripts retrospectively.

       The Interviewer as a Research Tool

      The interviewer was a radiation therapist with 8 years’ clinical experience. Interacting with patients and their caregivers on a daily basis helped develop the interviewer’s interview skills. Minimal power differential occurred between the participants and interviewer because the interviewer was not in direct care of the participants during the defined study period. The interviewer maintained neutrality in the interviews by deriving questions mainly from participants’ responses and cross-checking unclear responses.

       Data Analysis

      All study data were anonymized, and the information from each participant was allocated a study identification number. Thematic analysis was conducted to identify key findings. Initially, all interview transcripts were reviewed and coded for common themes by the principal investigator. To minimize interpretation bias, the transcripts were also reviewed independently by the coinvestigators, and the selection of themes verified. The verified themes were then summarized using a descriptive approach with respect to the individual participant’s demographics and cancer experiences. This was done to ensure that the participants’ views were presented in their purest form and without extensive interpretation or manipulation [
      • Sandelowski M.
      Whatever happened to qualitative description?.
      ,
      • Neergaard M.A.
      • Olesen F.
      • Andersen R.S.
      • Sondergaard J.
      Qualitative description—the poor cousin of health research?.
      ].

      Results

      Within the predefined study period (March–July 2011), each eligible patient and caregiver was approached for consent. Nine of eleven eligible candidates provided written informed consent. All individuals who provided consent were interviewed as planned without the need for an interpreter. By the end of the predefined study period, a few overarching themes consistently emerged from the participants’ interviews.

       Demographics

      The sample of participants consisted of five patients and four caregivers and represented a wide age range (median, 60 years; range, 47–80 years). All participants had a good performance status with a Eastern Cooperative Oncology Group performance status of ≤1. All participants had an extensive period of cancer care experiences (median, 4.5 years; range, 3–35 years). All patients interviewed had received previous radical or palliative radiotherapy and had previous experience with postradiotherapy follow-up. Additional demographics captured (including primary cancer diagnosis and team responsible for follow-up arrangements) are summarized in Table 1.
      Table 1Study Patients’ Demographics
      Study IDDate of Primary Cancer DiagnosisPrimary Cancer SiteDate of First Metastasis DiagnosisSite(s) Received Palliative RadiationTeam Responsible For Follow-Up
      P0012008LungDec. 2010Neck/spineMedical oncology
      P002/P005
      Caregiver of patient.
      May 2008LungMay 2008Spine/brain/lungMedical oncology
      P003
      Caregiver of patient.
      /P004
      1976MelanomaFeb. 2010Brain/lungPalliative care
      P006
      Only the caregiver participated in the interview, the demographics listed were that of the patient.
      Caregiver of patient.
      April 2009BreastOct. 2010Brain/lungDeceased
      P007
      Caregiver of patient.
      /P008
      Aug. 2001BreastFeb. 2010SpineMedical oncology
      P0092007Lung2007Spine/lungMedical oncology
      Caregiver of patient.
      Only the caregiver participated in the interview, the demographics listed were that of the patient.

       Overarching Themes

      Three major themes emerged from the narratives of all nine participants during data analysis. They strongly believed that follow-up appointments after palliative radiotherapy should evaluate treatment outcomes, manage side effects, and provide psychosocial support. They viewed their medical oncologist as the key member in their cancer care and found communicating with multiple professional groups stressful. Most important, they believed every patient’s needs were different and each patient should have personalized follow-up arrangements. Each of these major themes is explained in more detail below with illustrative quotes from the study participants.

       Theme 1: Follow-Up Should Evaluate Treatment Outcomes and Provide Psychosocial Support

      The participants believed follow-up arrangements should include diagnostic imaging and physical examination to evaluate treatment outcomes. They felt prearranged face-to-face appointments were necessary to perform appropriate assessments. The husband (P007) of a 58-year-old woman with metastatic breast cancer felt that the ongoing nature of scheduled follow-up was vital to the care of his wife:I think [follow-up is] extremely important. If you catch things early, that’s going to be the key and sometimes, especially with cancer, you never know if [the treatment] had an effect on it at all…so you have to do follow-up to keep a watchful eye on it.
      When dealing with unexpected complications from treatment, participants found great value in telephone calls from specific health care teams. For an 82-year-old gentleman who had recently received stereotactic radiosurgery for brain metastases, acute complications had made his wife (P003) very anxious. When she reached out for advice about these side effects between follow-up appointments, she found that the support she received via the telephone was able to immediately help both her and her husband deal with a difficult situation:He was having a fever and he was very weak and he didn’t want to get up…I was very concerned, and [the nurse] connected me with a doctor…I think I talked to two or three, and they talked to me. So I think I was happy about that.
      Participants strongly felt that follow-up appointments should not just address physical concerns, but should also provide an opportunity for emotional support. A man with metastases from malignant melanoma (P004) described how follow-up could contribute to his feelings of well-being by providing ongoing support and reassurance:I still feel it is important for me to know that someone is still not just putting everything in the file and forget about it. That from time to time there would be some additional contact with me to find out how I’m making out, how I feel about, and give me some idea of what the quality of my remaining life would be or what I could or could not expect. That, I think it’s important.

       Theme 2: Oncologist Providing Longitudinal Care Is Best Suited to Provide Follow-Up Care

      All participants had long-term experiences with cancer care and felt the medical oncologist was the key person throughout that care. They felt that the medical oncologist should conduct all follow-ups, even after palliative radiotherapy, and should refer the patient to the radiation oncology team only if the need for further treatment arose. The husband (P006) of a 54-year-old woman with metastatic breast cancer explained why the patient and caregiver prefer one central figure who oversees all aspects of the patient’s care:I rather do it like that, to deal with one oncologist and then let…them work out the whole thing…What makes us feel good about [this arrangement] is that the chemo oncologist can discuss her case to other specialists and use their own language [laughs] and their own knowledge too, and then we hear the feedback from them.
      Although participants believed the medical oncology team was their key contact, many felt that contacting the radiation oncology team after palliative radiotherapy was also helpful. Some participants who had extensive cancer experience with various health care teams were able to appropriately determine which team should address their concerns. However, some participants felt stressed not knowing who could help with their problems. A 54-year-old man (P009) with metastatic non–small cell lung cancer and progressive liver and bony metastases described how confusing it was for him and his wife to navigate between multiple disciplines:I was in pain in the leg and the arm, we called [radiation oncologist] and unfortunately she was away on vacation and her [secretary] said you should call [medical oncologist’s] office. So we called [medical oncologist’s] office, we didn’t get a clear answer either, because I’m in radiation now so [medical oncologist’s assistant] said I should call the radiation office…we didn’t know [who to contact].

       Theme 3: Personalized Follow-Up Arrangement Would Be Helpful

      All participants emphasized the importance of follow-up, however, there was no consensus regarding which particular follow-up arrangement was optimal. Many participants appreciated prescheduled face-to-face appointments and were not concerned about commuting long distances, paying for parking, or waiting a long time at the clinic. Conversely, some elderly participants found traveling long distances and spending long times waiting at the clinic exhausting. The benefits inherent in personalizing the follow-up schedule were highlighted by a 54-year-old woman with metastatic breast cancer (P008):[Follow-up] is specific to each individual and their situations, so to speak. So, at this point in time today would I say that I need to come back 3 or 6 months? I would say no. Because right now, hopefully, everything’s okay from the treatment. Maybe a couple of months down the road if I’m starting to get severe pain again, I would probably go to my medical oncologist…then he would probably refer me back here.

      Discussion

      Literature to-date has not explored the patient’s views of and needs for follow-up care after receiving palliative radiotherapy. Limited studies have elucidated such views and needs can change over the patient’s cancer trajectory [
      • Wong R.K.
      • Franssen E.
      • Szumacher E.
      • et al.
      What do patients living with advanced cancer and their carers want to know?—a needs assessment.
      ,
      • Bakker M.
      • Weug D.
      • Crommelin M.
      • Lybeert M.
      Information for the radiotherapy patient.
      ]. Also, no previous studies have explored the caregiver’s perspective on follow-up care after palliative radiotherapy. The success of follow-up for palliative patients is difficult to measure because it suffers a high attrition rate [
      • Chow E.
      • Fung K.W.
      • Bradley N.
      • Davis L.
      • Holden L.
      • Danjoux C.
      Review of telephone follow-up experience at the Rapid Response Radiotherapy Program.
      ,
      • Haddad P.
      • Wilson P.
      • Wong R.
      • et al.
      The success of data collection in the palliative setting—telephone or clinic follow-up?.
      ]. In this qualitative descriptive study, the participants openly shared their experiences with follow-up care after palliative radiotherapy and offered insight into how the care could be provided.
      For a group of patients and caregivers with good performance status and long experience with the cancer care system, there was no consensus regarding which particular follow-up arrangement was optimal, and the benefits of personalized follow-up schedules were emphasized. They felt prearranged face-to-face appointments were important and necessary to perform appropriate assessments of treatment outcomes. Participants strongly felt that follow-up appointments should not just address physical concerns but should also provide an opportunity for emotional support. Although these findings should not be overly generalised, they do suggest that every cancer patient’s experience is different, which resulted in variations in the type of follow-up care they needed. A systematic review of cancer patients’ and health care professionals’ views also found that routine follow-up by cancer specialists helped alleviate patients’ main concern of cancer recurrence; however, patients felt psychosocial support was lacking [
      • Lewis R.A.
      • Neal R.D.
      • Hendry M.
      • et al.
      Patients’ and healthcare professionals’ views of cancer follow-up: systematic review.
      ]. These views were consistent with those in our study and thus highlighted the need for health care professionals to address both the patient’s physical and emotional well-being at follow-ups.
      When dealing with unexpected complications from treatment, some participants found great value in unscheduled follow-up telephone calls. Previous studies had shown telephone follow-up is a feasible data collecting tool [
      • Chow E.
      • Fung K.W.
      • Bradley N.
      • Davis L.
      • Holden L.
      • Danjoux C.
      Review of telephone follow-up experience at the Rapid Response Radiotherapy Program.
      ,
      • Haddad P.
      • Wilson P.
      • Wong R.
      • et al.
      The success of data collection in the palliative setting—telephone or clinic follow-up?.
      ]. More importantly, this simple and cost-effect method could perhaps be used to enhance the patients’ and caregivers’ feelings of being supported. This preemptive contact between health care worker and patient may also prevent or alleviate the stress that some participants felt when they did not know who to contact when unexpected problems occurred.
      The findings from this study must be interpreted in context with the strengths and limitations of its design. During the accrual period, many potential participants for this study were deemed medically unfit to participate. This resulted in a relatively homogeneous group of study participants with good performance status and extensive experience navigating the cancer care system [
      • Denscombe M.
      The good research guide for small-scale social research project.
      ]. Inclusion of patients with a poorer performance status or those who were naive to the cancer care system would likely produce a very different view of follow-up practices after palliative radiotherapy. Nonetheless, this qualitative descriptive study did successfully capture a snapshot of patient and caregiver experiences with follow-up care.

      Conclusions

      This qualitative descriptive study used patients’ and caregivers’ own words to describe their experiences during follow-up care after palliative radiotherapy. They strongly believed that follow-up appointments after palliative radiotherapy should evaluate treatment outcomes, manage side effects, and provide psychosocial support. They viewed their oncologists, who have been actively providing longitudinal care, in many cases their medical oncologist, as the key member most suited to provide follow-up care. Most important, they believed every patient’s follow-up needs were different and required a personalized approach in offering follow-up care. Further study on the feasibility and effectiveness of providing such patient-centred service would be illuminating and would have the potential to enhance patients’ and caregivers’ overall experience following palliative radiotherapy.

      Acknowledgments

      The authors thank the Canadian Association of Medical Radiation Technologists for providing funds from the 2011 members research grant for this study.

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