Patients ' Quality of Life During Active Cancer Treatment: A Qualitative Study
Patients ' Quality of Life During Active Cancer Treatment: A Qualitative Study
  Abstract
  Background: Patients’ quality of life has become a major objective of care in oncology. At the same time, it has
  become the object of increasing interest by researchers, working with both quantitative and qualitative methods.
  Progress in oncology has enabled more patients to survive longer, so that cancer is increasingly often a chronic
  disease that requires long-term treatment that can have negative effects on patients’ quality of daily life. Nonetheless,
  no qualitative study has explored what patients report affects their quality of daily life during the treatment period. This
  study is intended to fill this gap.
  Methods: We conducted a multicenter qualitative study based on 30 semi-structured interviews. Participants,
  purposively selected until data saturation, had diverse types of cancer and had started treatment at least 6 months
  before interview. Data were examined by thematic analysis.
  Results: Our analysis found two themes: (1) what negatively affected for patient’s quality of daily life during the
  treatment period, a question to which patients responded by talking only about the side effects of treatment; and (2)
  what positively affected their quality of daily life during the treatment period with three sub-themes: (i) The interest in
  having —investing in — a support object that can be defined as an object, a relationship or an activity particularly
  invested by the patients which makes them feel good and makes the cancer and its treatment bearable, (ii)The
  subjective perception of the efficacy of the antitumor treatment and (iii) the positive effects of relationships, with
  friends and family, and also with their physician.
  Conclusions: Patients must be involved in their care if they are to be able to bear their course of treatment and find
  ways to endure the difficult experience of cancer care. The support object represents an important therapeutic lever
  that can be used by their oncologists. They should be interested in their support objects, in order to support the
  patients in this investment and to help them to maintain it throughout the health care pathway. Furthermore, showing
  interest in this topic, important to the patient, could improve the physician-patient relation without using up very
  much of the physician’s time.
  Keywords: Qualitative research, Oncology, Care, Physician-patient relationship, Quality of life
* Correspondence: jordan.sibeoni@ch-argenteuil.fr
Jordan Sibeon and Camille Picard have contributed equally to this article.
Laurence Verneuil and Anne Revah-Levy are co-senior authors.
1
 Service Universitaire de Psychiatrie de l’Adolescent, Argenteuil Hospital
Centre, 69 rue du LTC Prud’hon, 95107 Argenteuil, France
2
 ECSTRRA Team, UMR-1153, Inserm, Paris Diderot University, Sorbonne Paris
Cite, Paris, France
Full list of author information is available at the end of the article
                                        © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
                                        International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
                                        reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
                                        the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
                                        (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Sibeoni et al. BMC Cancer (2018) 18:951                                                                              Page 2 of 8
  Finally, they lamented the persistent sensory effects,                  What positively affects the quality of daily life
such as the loss of a sense of taste, and those that impaired             Patients’ narratives about what allowed them to maintain
their self-image, such as the loss of hair, mentioned as                  a good quality of daily life on a daily basis during treat-
often by men as by women.                                                 ment were richer and more varied. They emphasized three
                                                                          different aspects:
   P17: “I had chemo, hard chemo. It made my hair fall
   out, it destroyed everything it went through. If you talk                – (i) The interest in having —investing in — a support
   about the effects of chemo, it's the hair, and then the                    object. We have chosen to translate the French
   nails, and gastrointestinal problems.”                                     idiom “objet d’étayage” by the English term Support
                                                                              object. “Objet d’étayage”/support object can be
                                                                              defined as an object, a relationship or an activity
The paradoxical experience of adverse effects                                 particularly invested by the patients in their daily
We also found a paradoxical experience around these                           lives, which makes them feel good and makes the
side effects. Simultaneously, chemotherapy made them                          cancer and its treatment bearable.
feel bad and had numerous burdensome effects, but                           – (ii) Their subjective perception of the efficacy of the
these also became an indicator of its therapeutic                             antitumor treatment also exerted a positive impact
efficacy.                                                                     on their quality of daily life.
                                                                            – (iii) The positive effects of relationships.
   P20: “It destroys the diseased cells, with an impact
   that we call side effects, collateral damage.”
                                                                          The support object
   P29: “What matters is the result. We know that chemo                   Most of the patients had an activity or relationship
   kills good cells, but it also kills the bad ones.”                     especially important to them that was good for them
                                                                          and helped them to live better with their disease and
  Similarly, we observed patients’ ambivalence toward                     its treatment. This real function of this object was to
invasive treatment such as surgery, experienced as                        support them.
burdensome and dangerous but also as radical and
more effective.                                                              P1: “My camping car. That's what saved me. I love to
                                                                             travel! Roaming, I love it.”
   P23: “I had a rotten bladder, they took it out, but the
   party goes on, if I can say it like that.”                               For some patients, this was a regular physical activity.
                                                                          They described a physical effect, that is, an awareness
   P28: “The lung operation was hard to stand, you                        of their physical capacity. They also mentioned a mo-
   don't recover just like that, but then, afterwards, it                 ment of escape, where they were not thinking about
   went better.”                                                          their disease and, for those who did team sports, the
Sibeoni et al. BMC Cancer (2018) 18:951                                                                               Page 5 of 8
Table 3 Summary of participants                                       P10: “What helped me most was all the beautiful
                                                          n (%)       performances I saw, which are still like a small fire
Gender, women                                             17 (57)     inside me.”
Age, mean y                                               63,5
                                                                      For others, it could be work, or religious or spiritual
  30–40                                                   3 (10)
                                                                    practice, or meditation.
  40–50                                                   5 (17)
  50–60                                                   6 (20)      P7: “I'm a deputy mayor in my municipality; [the
  60–70                                                   9 (30)      cancer] doesn't keep me from going to spend two hours
  ≥ 70                                                    7 (23)      a day at city hall and participating in town council
Cancer type
                                                                      meetings. I live normally.”
  Breast carcinoma                                        9 (30)
                                                                      P30: “Yoga with its Hindu philosophy, it really puts
  Lung carcinoma                                          1 (3)       things in perspective.”
  Melanoma                                                7 (23)
  Skin lymphoma                                           6 (20)
  Bladder/kidney carninoma                                3 (10)    Subjective perception of the effectiveness of antitumor
  Prostate carcinoma                                      1 (3)
                                                                    treatment
                                                                    What positively affected patients’ quality of daily life, ac-
  Testis germ cell cancer                                 1 (3)
                                                                    cording to them, was perceiving that their antitumor
  Ovaries                                                 2 (7)     treatment was effective. They had a representation of
Disease stage                                                       cancer treatment as a battle against the disease; treat-
  Metastatic                                              14 (47)   ment was perceived as effective if it halted the disease
  Localized                                               16 (53)   and ineffective if it did not.
Treatment recieved
                                                                      P11: “Chemo, that helped me. Stopped the bad stuff.”
  Intravenous chemotherapy only                           6 (20)
  Intravenous chemotherapy + others                       19 (63)     P7: “I cannot say that the treatment is helpful today,
  Oral chemotherapy, other treatments                     5 (17)      because I have more lesions today than I did two
Duration of cancer treatment period                                   months ago.”
  Less than 1 year                                        6 (20)
  1 to 3 years                                            6 (20)
                                                                      Some patients relied on and appropriated clinical or
                                                                    paraclinical efficacy criteria, such as tumor size on im-
  3 to 5 years                                            12 (40)
                                                                    aging or the lab measurements of tumor markers.
  More than 5 years                                       6 (20)
Recruitment site                                                      P2: “When the PSA goes down, I'm in a better mood, it
  Paris St Louis Hospital                                 15 (50)     makes me happy.”
  Bobigny, Avicenne Hospital                              3 (10)
  Caen, university hospital centre                        12 (40)
                                                                      The type of treatment also influenced the perception
                                                                    of efficacy. Patients found it easier to perceive surgical
                                                                    treatment as effective. Patients described surgery as a
ability to maintain a social association outside of a               one-time procedure with generally a curative objective:
health context.                                                     total ablation of the tumor.
   P27: “I began to play golf too: to let go and not think            P18: “As soon as they told us the day after the
   about anything. And that, it was really good. It's always          operation that it had succeeded, all we had to do was
   really good, it lets you think only about yourself, already,       wait to get better. Finally it wasn't so awful.”
   a little, and to escape from all that. It lets you really
   concentrate, to empty your head and not think about                Inversely, patients perceived the unavailability of surgi-
   anything but yourself.”                                          cal treatment as inefficacy.
  For other patients, it was a hobby or traveling, again              P5: “But they didn't operate on me. Because otherwise,
something that let them take themselves out of the every-             I said, take off both breasts and we're done. But
day and escape from the disease and from treatment.                   apparently it wasn't possible, it was inoperable.”
Sibeoni et al. BMC Cancer (2018) 18:951                                                                              Page 6 of 8
with a support object. The support object, in our opinion,       sample was 4 years. Our results might not be relevant for
represents an important therapeutic lever that can be used       patients who have just started treatment. Further qualita-
to improve the physician-patient relationship. That is,          tive studies should be made to address this specific period
when patients are able to choose and be involved with a          of time. Finally, our results don’t mention the influence of
support object or activity, the physician must support them      age on the quality of daily life. Further qualitative studies
and converse with them on this topic.                            with specific age populations should be made to explore
                                                                 the extensive role age plays in this matter.
Clinical implications
Numerous studies have showed that physicians fail to take        Conclusion
the spiritual and religious concerns of their severely ill pa-   Quality of life is a daily concern for patients during cancer
tients into account [38], despite the demonstrated benefits      treatment. This qualitative study provides access to patients’
in terms of patients’ satisfaction and the importance of         experience of their care and daily lives, allowing us to see
these aspects to their QoL [39]. In the field of cancer care,    cancer care through the patients’ eyes. In their daily clinical
physicians should be interested in their patients’ support       practice, doctors face multiple constraints – of time and
objects, whatever they are. First, this allows doctors to        workload —that hinder them from taking their patients’
support the patients in their investment in this object and      subjective health status into account. We suggest as a start
to help them maintain this investment throughout the             that they include in their practice a systematic interest for
health care pathway. Second, showing interest during             the support object that their patients have chosen.
visits in this topic, important to the patient, and convers-
                                                                 Abbreviations
ing about it could help to establish a trusting relationship     EBM: Evidence Based Medicine; PTSD: Post-traumatic stress disorder;
and therefore, according to our results, improving his or        QoL: Quality of life
her quality of daily life, without using up very much of the
                                                                 Acknowledgements
physician’s time. That is, with the increasing transform-        We would like to thank all the patients for their participation in this study.
ation of cancer into a chronic disease comes the need for        We also want to thank Jo Ann Cahn for the translation in English.
a different kind of relationship, one in which physicians
                                                                 Funding
can fulfill the relational needs of care. The issue here is      The study was supported by Grant No. 00050334 from the Fondation de
not that oncologists should replace psychologists or psy-        France, “Soigner, soulager, accompagner” 2014.
chiatrists [40], but rather that they have a relational tool
                                                                 Availability of data and materials
that enables them to support the patient in their manage-        The datasets analyzed during the current study are available from the
ment of a serious and very trying chronic disease and thus       corresponding author on reasonable request.
to help them to maintain their quality of daily life. We
                                                                 Authors’ contributions
chose to focus on patients’ daily life during their treatment    JS, LV, ARL conceived and designed the study; JS, CP, MO, ML collected the
period. This differs from, and is complementary with,            data; JS, CP, MO, ML, GB, LV, ARL analyzed the data; JS, LV, ARL wrote the
others approaches such as shared decision making [41] or         paper. All authors had full access to all of the data in the study and take
                                                                 responsibility for the integrity of the data and the accuracy of the data
self-management [38], that also seek to improve patients’        analysis. All authors read and approved the final manuscript.
quality of daily life and patient-physician relations.
                                                                 Ethics approval and consent to participate
                                                                 The Paris-Descartes University review board (CERES) approved the research
Study limitations
                                                                 protocol (IRB number: 20140600001072). All participants provided written in-
Our qualitative study took place in three different cen-         formed consent.
ters and included patients with various types of cancer.
These points make our findings transferable to other             Consent for publication
                                                                 Not applicable.
cancer contexts. However, some limitations must be
taken into consideration. First, this took place in France,      Competing interests
and caution is required in transposing our results to            The authors declare that they have no competing interests.
6
 EPSM Lille métropole, pôle de psychiatrie adulte 59g21, Lille, France.                 21. Burke S, Wurz A, Bradshaw A, Saunders S, West MA, Brunet J. Physical
7
 Université Paris 13 – Léonard de Vinci, Villetaneuse, France. 8AP-HP-Hôpital               activity and quality of life in Cancer survivors: a meta-synthesis of qualitative
Avicenne, Service d’Oncologie médicale–Bobigny, Bobigny, France.                            research. Cancers. 2017;9(6):53.
                                                                                        22. Stein KD, Syrjala KL, Andrykowski MA. Physical and psychological long-term
Received: 8 February 2018 Accepted: 26 September 2018                                       and late effects of cancer. Cancer. 2008;112(S11):2577–92.
                                                                                        23. Patton MQ. Purposeful Sampling. Qualitative research & evaluation methods.
                                                                                            3rd ed. Thousand Oaks: Sage; 2002. p. 230–48.
                                                                                        24. Dey I. Grounding grounded theory: guidelines for qualitative inquiry. San
References                                                                                  Diego: Academic Press; 1999.
1. Sosnowski R, Kulpa M, Ziętalewicz U, Wolski JK, Nowakowski R, Bakuła R,              25. Braun V, Clarke V, Terry G. Chapter 7 thematic analysis. In: Qualitative
    Demkow T. Basic issues concerning health-related quality of life. Cent Eur J            research in clinical and Health Psychology- Poul Rohleder, Antonia C Lyons
    Urol. 2017;70(2).                                                                       Palgrave Macmillan,. Palgrave Macmillan; 2014.
2. Bennett BM, Wells JR, Panter C, Yuan Y, Penrod JR. The Humanistic Burden             26. O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for
    of Small Cell Lung Cancer (SCLC): A Systematic Review of Health-Related                 reporting qualitative research: a synthesis of recommendations. Acad Med.
    Quality of Life (HRQoL) Literature. Frontiers in Pharmacology. 2017;15(8).              2014;89(9):1245–51.
3. Korol EE, Wang S, Johnston K, Ravandi-Kashani F, Levis M, van Nooten F.              27. Mehnert A, Koch U. Prevalence of acute and post-traumatic stress disorder
    Health-related quality of life of patients with acute myeloid leukemia: a               and comorbid mental disorders in breast cancer patients during primary
    systematic literature review. Oncol Ther. 2017;5(1):1–16.                               cancer care: a prospective study. Psycho-Oncology 2007; 1;16(3):181–188.
4. Walter T. Maintaining quality of life for patients with neuroendocrine               28. Zhen R, Quan L, Zhou X. Co-occurring patterns of post-traumatic stress
    tumours. Lancet Oncol. 2017;18(10):1299–300.                                            disorder and depression among flood victims: a latent profile analysis. J
5. Ganguli A, Wiegand P, Gao X, Carter JA, Botteman MF, Ray S. The impact of                Health Psychol. 2018:135910531876350.
    second-line agents on patients’ health-related quality of life in the               29. Abbey G, Thompson SBN, Hickish T, Heathcote D. A meta-analysis of
    treatment for non-small cell lung cancer: a systematic review. Qual Life Res.           prevalence rates and moderating factors for cancer-related post-traumatic
    2013;22(5):1015–26.                                                                     stress disorder. Psycho-Oncology 2015; 1;24(4):371–381.
6. Mutsaers A, Greenspoon J, Walker-Dilks C, Swaminath A. Systematic review of          30. Larsen SE, Berenbaum H. Did the DSM-5 improve the traumatic stressor
    patient reported quality of life following stereotactic ablative radiotherapy for       criterion?: association of DSM-IV and DSM-5 criterion a with posttraumatic
    primary and metastatic liver cancer. Radiat Oncol. 2017;12(1).                          stress disorder symptoms. Psychopathology. 2017;50(6):373–8.
7. Siyam T, Ross S, Campbell S, Eurich DT, Yuksel N. The effect of hormone              31. Koedoot C g, de Haes J, Heisterkamp S, Bakker P, de Graeff A, de Haan R.
    therapy on quality of life and breast cancer risk after risk-reducing salpingo-         Palliative chemotherapy or watchful waiting? A vignettes study among
    oophorectomy: a systematic review. BMC Womens Health. 2017;17(1).                       oncologists. JCO 2002 1;20(17):3658–3664.
8. RETURN TO BREAST Collaborative group, D’Egidio V, Sestili C, Mancino M,              32. Lemieux J, Maunsell E, Provencher L. Chemotherapy-induced alopecia and
    Sciarra I, Cocchiara R, et al. Counseling interventions delivered in women              effects on quality of life among women with breast cancer: a literature
    with breast cancer to improve health-related quality of life: a systematic              review. Psycho-Oncology 2008; 1;17(4):317–328.
    review. Qual Life Res. 2017;26(10):2573–92.                                         33. Rosen AC, Case EC, Dusza SW, Balagula Y, Gordon J, West DP, et al. Impact
                                                                                            of dermatologic adverse events on quality of life in 283 Cancer patients: a
9. McLachlan S-A, Allenby A, Matthews J, Wirth A, Kissane D, Bishop M, et al.
                                                                                            questionnaire study in a dermatology referral clinic. Am J Clin Dermatol
    Randomized trial of coordinated psychosocial interventions based on
                                                                                            2013 1;14(4):327–333.
    patient self-assessments versus standard care to improve the psychosocial
                                                                                        34. Hershman D, Calhoun E, Zapert K, Wade S, Malin J, Barron R. Patients’
    functioning of patients with Cancer. J Clin Oncol. 2001;19(21):4117–25.
                                                                                            perceptions of physician-patient discussions and adverse events with
10. Gonzalez-saenz de Tejada M, Bilbao A, Baré M, Briones E, Sarasqueta C,
                                                                                            Cancer therapy: patient perceptions of adverse events with chemotherapy.
    Quintana JM, et al. Association between social support, functional status,
                                                                                            Arch Drug Inf. 2008;1(2):70–8.
    and change in health-related quality of life and changes in anxiety and
                                                                                        35. Earle CC, Landrum MB, Souza JM, Neville BA, Weeks JC, Ayanian JZ.
    depression in colorectal cancer patients: social support, functional status,
                                                                                            Aggressiveness of Cancer care near the end of life: is it a quality-of-care
    HRQoL, and distress in CRC. Psycho-Oncology. 2017;26(9):1263–9.
                                                                                            issue? J Clin Oncol 2008 10;26(23):3860–3866.
11. Chirico A, Lucidi F, Merluzzi T, Alivernini F, Laurentiis MD, Botti G, et al. A
                                                                                        36. Song Y, Lv X, Liu J, Huang D, Hong J, Wang W, et al. Experience of nursing
    meta-analytic review of the relationship of cancer coping self-efficacy with
                                                                                            support from the perspective of patients with cancer in mainland China:
    distress and quality of life. Oncotarget. 2017;8:36800–11. https://doi.org/10.
                                                                                            nursing support for patients with cancer. Nurs Health Sci. 2016;18(4):510–8.
    18632/oncotarget.15758.
                                                                                        37. Wei C, Nengliang Y, Yan W, Qiong F, Yuan C. The patient-provider discordance
12. Buffart LM, Kalter J, Sweegers MG, Courneya KS, Newton RU, Aaronson NK,
                                                                                            in patients’ needs assessment: a qualitative study in breast cancer patients
    et al. Effects and moderators of exercise on quality of life and physical
                                                                                            receiving oral chemotherapy. J Clin Nurs. 2017;26(1–2):125–32.
    function in patients with cancer: an individual patient data meta-analysis of
                                                                                        38. Best M, Butow P, Olver I. Doctors discussing religion and spirituality: a
    34 RCTs. Cancer Treat Rev. 2017;52:91–104.
                                                                                            systematic literature review. Palliat Med 2016; 1;30(4):327–337.
13. Shao Z, Zhu T, Zhang P, Wen Q, Li D, Wang S. Association of financial status
                                                                                        39. Williams JA, Meltzer D, Arora V, Chung G, Curlin FA. Attention to inpatients’
    and the quality of life in Chinese women with recurrent ovarian cancer.
                                                                                            religious and spiritual concerns: predictors and association with patient
    Health Qual Life Outcomes. 2017;15(1).
                                                                                            satisfaction. J Gen Intern Med. 2011;26(11):1265–71.
14. Faguet GB. Quality end-of-life cancer care: an overdue imperative. Crit Rev
                                                                                        40. Jacobsen PB, Jim HS. Psychosocial interventions for anxiety and depression
    Oncol Hematol. 2016;108:69–72.
                                                                                            in adult Cancer patients: achievements and challenges. CA Cancer J Clin.
15. Park S-A, Chung SH, Lee Y. Factors influencing the quality of life of patients
                                                                                            2008;58(4):214–30.
    with advanced cancer. Appl Nurs Res. 2017;33:108–12.
                                                                                        41. Kehl KL, Landrum MB, Arora NK, Ganz PA, Van Ryn M, Mack JW, Keating NL.
16. Høxbroe Michaelsen S, Grønhøj C, Høxbroe Michaelsen J, Friborg J, von
                                                                                            Association of actual and preferred decision roles with patient-reported
    Buchwald C. Quality of life in survivors of oropharyngeal cancer: a systematic
                                                                                            quality of care: shared decision making in cancer care. JAMA Oncol. 2015;
    review and meta-analysis of 1366 patients. Eur J Cancer. 2017;78:91–102.
                                                                                            1(1):50–8.
17. The ACTION Study Group. Health-related quality of life and psychological            42. Hanlon P, Daines L, Campbell C, McKinstry B, Weller D, Pinnock H.
    distress among cancer survivors in Southeast Asia: results from a                       Telehealth interventions to support self-management of long-term
    longitudinal study in eight low- and middle-income countries. BMC Med.                  conditions: a systematic metareview of diabetes, heart failure, asthma,
    2017;15(1). https://doi.org/10.1186/s12916-016-0768-2.                                  chronic obstructive pulmonary disease, and cancer. J Med Internet Res.
18. Kaplan RM, Ries AL. Quality of life: concept and definition. J Chron Obstruct           2017;19(5).
    Pulmon Dis. 2007;4(3):263–71.
19. Morse JM. Qualitative health research: creating a new discipline. Walnut
    Creek: Left Coast Press; 2012. p. 176.
20. Jassim GA, Whitford DL. Understanding the experiences and quality of life
    issues of Bahraini women with breast cancer. Soc Sci Med. 2014;107:189–95.