Unmet Information Needs and Quality of Life in Young Breast Cancer Survivors in Japan

Background: Young breast cancer survivors have specific needs related to age. Clarifying the relationships between unmet information needs and quality of life (QOL) in young breast cancer survivors can contribute to constructing a support system to enhance QOL in patients. Objective: This study aimed to identify the unmet information needs and examine the relationships between unmet information needs and QOL in young breast cancer survivors in Japan. Methods: Participants completed an information needs questionnaire containing 26 items, the World Health Organization Quality of Life Instrument–Short Form (WHOQOL-BREF), and a demographic and medical information questionnaire. Results: Fifty participants (30.7%) were unsatisfied with “overall communication with medical professionals.” The mean scores on all subscales of the WHOQOL-BREF of the participants who were satisfied with “overall communication with medical professionals” were significantly higher than those of the unsatisfied group. “follow-up tests,” “treatment for recurrence of breast cancer,” “strategies about communication with medical staff,” and “nutrition” were significantly related with all subscales in the WHOQOL-BREF. “Secondary menopause caused by hormonal therapy” was significantly related with physical and psychological health. Conclusions: Japanese young breast cancer survivors have unmet information needs, including age-specific issues. These unmet information needs are related to QOL. In particular, “overall communication with medical professionals,” which is the most unmet information need, is related to QOL. Implications for Practice: Oncology nurses should teach patients communication skills, provide adequate information, and provide education and emotional support to medical professionals to improve QOL in young breast cancer survivors.

[1]  Hilla Peretz,et al.  Ju n 20 03 Schrödinger ’ s Cat : The rules of engagement , 2003 .

[2]  A. Neugut,et al.  A survey of breast cancer physicians regarding patient involvement in breast cancer treatment decisions. , 2013, Breast.

[3]  A. Hasenburg,et al.  Use of complementary and alternative medicine in breast cancer patients and their experiences: a cross-sectional study. , 2012, European journal of cancer.

[4]  J. Engel,et al.  Communication, quality of life and age: results of a 5-year prospective study in breast cancer patients. , 2003, Annals of oncology : official journal of the European Society for Medical Oncology.

[5]  D. Camp-Sorrell Cancer and its treatment effect on young breast cancer survivors. , 2009, Seminars in oncology nursing.

[6]  X Wang,et al.  Major concerns and needs of breast cancer patients. , 1999, Cancer nursing.

[7]  R. Sanson-Fisher,et al.  Evaluation of an instrument to assess the needs of patients with cancer , 2000, Cancer.

[8]  P. Ganz,et al.  Implementing a survivorship care plan for patients with breast cancer. , 2008, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[9]  H. Wieand,et al.  Controlled evaluation of three drug combination regimens versus fluorouracil alone for the therapy of advanced gastric cancer. North Central Cancer Treatment Group. , 1994, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[10]  E. Winer,et al.  Web-based survey of fertility issues in young women with breast cancer. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[11]  Sylvie Lambert,et al.  The unfulfilled promise: a systematic review of interventions to reduce the unmet supportive care needs of cancer patients , 2011, Supportive Care in Cancer.

[12]  C. Shimizu,et al.  Physicians’ knowledge, attitude, and behavior regarding fertility issues for young breast cancer patients: a national survey for breast care specialists , 2013, Breast Cancer.

[13]  T. Furukawa,et al.  Patients' supportive care needs and psychological distress in advanced breast cancer patients in Japan. , 2011, Japanese journal of clinical oncology.

[14]  M. Friedlander,et al.  Fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[15]  A. Partridge,et al.  Premature menopause in young breast cancer: effects on quality of life and treatment interventions. , 2013, Journal of thoracic disease.

[16]  A. Girgis,et al.  Brief assessment of adult cancer patients' perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). , 2009, Journal of evaluation in clinical practice.

[17]  J. Bloom,et al.  Post‐treatment regret among young breast cancer survivors , 2011, Psycho-oncology.

[18]  P. Goodwin,et al.  Risk of menopause during the first year after breast cancer diagnosis. , 1999, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[19]  A. Jemal,et al.  Cancer statistics, 2014 , 2014, CA: a cancer journal for clinicians.

[20]  T. Shien,et al.  Breast cancer in young women : Issues and perspectives regarding patients ’ and survivors ’ care Clinicopathological features of young patients ( < 35 years of age ) with breast cancer in a Japanese Breast Cancer Society supported study , 2014 .

[21]  R. Sanson-Fisher,et al.  The unmet supportive care needs of patients with cancer , 2000, Cancer.

[22]  S. Skevington,et al.  The World Health Organization's WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A Report from the WHOQOL Group , 2004, Quality of Life Research.

[23]  Yarbro Ch,et al.  Quality of life of patients with prostate cancer treated with surgery or radiation therapy. , 1998 .

[24]  K. Eguchi,et al.  Nationwide survey on complementary and alternative medicine in cancer patients in Japan. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[25]  Jeffrey D. Robinson,et al.  Consultations between patients with breast cancer and surgeons: a pathway from patient-centered communication to reduced hopelessness. , 2013, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[26]  I. Chopra,et al.  A systematic review of quality of life instruments in long-term breast cancer survivors , 2012, Health and Quality of Life Outcomes.

[27]  A. Oshima,et al.  A qualitative study of decision-making by breast cancer patients about telling their children about their illness , 2010, Supportive Care in Cancer.

[28]  P. Butow,et al.  After Cancer , 2007, Journal of psychosocial oncology.

[29]  S. Steginga,et al.  Young women's experience of breast cancer: defining young and identifying concerns , 2000, Psycho-oncology.

[30]  Lynda Hayward,et al.  The cancer Support Person's Unmet Needs Survey , 2009, Cancer.

[31]  M. Küçük,et al.  A qualitative study of the information needs of premenopausal women with breast cancer in terms of contraception, sexuality, early menopause, and fertility , 2010, International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics.

[32]  W. Ajiki,et al.  Cancer incidence and incidence rates in Japan in 2005: based on data from 12 population-based cancer registries in the Monitoring of Cancer Incidence in Japan (MCIJ) project. , 2011, Japanese journal of clinical oncology.

[33]  P. Ganz,et al.  Cancer survivorship: a new challenge in delivering quality cancer care. , 2006, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[34]  R. Sanson-Fisher,et al.  The unmet supportive care needs of patients with cancer. Supportive Care Review Group. , 2000 .

[35]  N. Roche Follow-up after treatment for breast cancer in young women. , 2006, Breast.

[36]  B. Bilodeau,et al.  Information needs, sources of information, and decisional roles in women with breast cancer. , 1996, Oncology nursing forum.

[37]  M. Power,et al.  Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment , 1998 .

[38]  Hiroshi Nishimoto,et al.  Cancer incidence and incidence rates in Japan in 2008: a study of 25 population-based cancer registries for the Monitoring of Cancer Incidence in Japan (MCIJ) project. , 2012, Japanese journal of clinical oncology.

[39]  R. Gray,et al.  ‘Nothing fit me’: nationwide consultations with young women with breast cancer , 2006, Health expectations : an international journal of public participation in health care and health policy.

[40]  P. Ganz,et al.  Quality of life, fertility concerns, and behavioral health outcomes in younger breast cancer survivors: a systematic review. , 2012, Journal of the National Cancer Institute.

[41]  J. Griggs,et al.  Vitality, mental health, and satisfaction with information after breast cancer. , 2007, Patient education and counseling.

[42]  N. Dubrawsky Cancer statistics , 1989, CA: a cancer journal for clinicians.

[43]  J. Rowland,et al.  Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). , 2005, Patient education and counseling.

[44]  国立がん研究センターがん対策情報センター The Japan Cancer Surveillance Research Group. Cancer Incidence and Incidence Rates in Japan in 2005: Based on Data from 12 Population-based Cancer Registries in the Monitoring of Cancer Incidence in Japan (MCIJ) Project , 2011 .

[45]  S. Saxena,et al.  The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. , 1998, Social science & medicine.

[46]  M. Jefford,et al.  Development and Pilot Testing of a Nurse-Led Posttreatment Support Package for Bowel Cancer Survivors , 2011, Cancer nursing.

[47]  A. Partridge,et al.  Adjuvant therapies for very young women with early stage breast cancer. , 2011, Breast.

[48]  A. Rosen,et al.  Psychosocial distress in young cancer survivors. , 2009, Seminars in oncology nursing.

[49]  Byeong‐Woo Park,et al.  Unmet Needs of Breast Cancer Patients Relative to Survival Duration , 2011, Yonsei medical journal.

[50]  H. Cody The sentinel node concept: a critique of the critique. , 2006, Breast.

[51]  A. Carvalho,et al.  Anxiety, depression and defense mechanisms associated with treatment decisional preferences and quality of life in non‐metastatic breast cancer: a 1‐year prospective study , 2013, Psycho-oncology.

[52]  S. Saxena,et al.  The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. , 1995, Social science & medicine.

[53]  Meredith Wallace Kazer,et al.  Cancer Nursing: Principles and Practice, 5th Edition , 2001 .

[54]  D. Cella,et al.  Age‐related differences in the quality of life of breast carcinoma patients after treatment , 1999, Cancer.

[55]  H. Moreira,et al.  The role of appearance investment in the adjustment of women with breast cancer , 2010, Psycho-oncology.

[56]  S. Folkman,et al.  Stress, Appraisal, and Coping. New York, NY: Springer; , 1984 .

[57]  S. Crawford,et al.  Quality of life among younger women with breast cancer. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[58]  G. Colditz,et al.  Functional impact of breast cancer by age at diagnosis. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[59]  P. Butow,et al.  The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure) , 2007, Psycho-oncology.

[60]  S. Folkman,et al.  Stress, appraisal, and coping , 1974 .

[61]  K. Ashing-Giwa,et al.  Examining emotional outcomes among a multiethnic cohort of breast cancer survivors. , 2011, Oncology nursing forum.

[62]  B. Zebrack Information and service needs for young adult cancer survivors , 2009, Supportive Care in Cancer.