Information Needs of Older Women Faced With a Choice of Primary Endocrine Therapy or Surgery for Early Stage Breast Cancer: A Literature Review

* / Author
Country of Study / Aims of study / Study methods & Sample & Age / Key Findings
  • Articles predominantly examining Information Needs

58 / Ankem, K. (2006).
World-wide literature / To establish the aggregate relationships between demographic & situational variables and overall information needs among cancer patients. / Meta-analysis of 75 articles /
  • Younger people (generally those <55yrs) require more information than older people.
  • Those who want an active role in decision making regardless of age require more information.

61 / Beisecker, & Beisecker, (1990).
USA / 1.To investigate whether patients want medical information and whether they use it to make personal treatment decisions
2. To explore what factors influence or explain patient information-seeking behaviour. / 106 patients age range 17-85yrs, completed the Desire for Medical Information and the Locus of Authority in Medical Decision Making questionnaires and engaged in interviews /
  • Patients expressed a strong desire for information – but did not frequently seek further information
  • Patients placed responsibility for TDM on the physician
  • Length of consultation, patient diagnosis & reason for consultation impact information seeking. Longer consultations increase information seeking.
  • Older patients do ask questions given time.

18 / Biganzoli et al (2012)
World-wide literature / To provide an update on management of breast cancer in elderly women / Review of previous SIOG & EUSOMA recommendations /
  • Physician must provide clear information on prognosis, treatment options, & potential toxicity.
  • Physician to be attentive to patient's expectations & preferences particularly Quality of Life(QoL).
  • All patients need to be fully informed.
  • Patients have misconceptions about breast cancer e.g. that there is excessive treatment for little benefit.
  • Patients want an active role in decision making.
  • Older people less willing to compromise on QoL.
  • General health & functional independence are important to older people.

52 / Bilodeau, & Degner, (1996).
Canada / 1.To describe the preferred and actual roles in treatment decision-making among women with newly diagnosed breast cancer.
2.To describe the sources of information and identify and prioritise the information needs. / Cross-sectional survey. 74 recently diagnosed women with breast cancer. 3 measures used to data collect; Control Preference Card Sort, Thurstone Scaling of Information Needs and ranking of information sources /
  • 43% preferred a passive role in treatment decision-making
  • 53% assumed a passive role – more so in older women.
  • 37% preferred collaborative role – only 19% achieved this
  • Women preferred face to face information from HCP, friend and relatives as opposed to written information
  • Specific information included: stage of disease, likelihood of cure & treatment options
  • Older women ranked self-care as most important

31 / Bottomley, & Jones, (1997).
UK / To examine the views of newly diagnosed women with breast cancer to establish whether their needs were satisfied during treatment.
To evaluate the integration of changes into practice / Cross-sectional study of 18 chemotherapy patients. Mean age 46yrs, range 28-66. Semi-structured interviews /
  • One of the main causes of psychological distress was the requirement to travel long distances for chemotherapy treatment & poor control over travel arrangements.
  • Pleasant physical clinical environment eased the distress.
  • Privacy when being given important information is important
  • The medium in which information is given is important to allow greater understanding and retention.
  • Patients wanted detailed information about condition and treatment. 2 patients wanted little detail.
  • Request for audio-recordings of consultation & video of possible treatment process
  • Information needs to be delivered tactfully and honestly

53 / Butow, et al (1996).
Australia / To investigate the experience and preferences for communication about diagnosis, prognosis and treatment of patients diagnosed with breast cancer or melanoma / Self-reported questionnaire. N=56 breast cancer patients at different stages. Mean age 48yrs, range 26-75. /
  • How the diagnosis is communicated is important
  • 50% wanted their spouse to be present when told
  • 38% wanted to be alone
  • Less than half were told about support services
  • 28% said an audio recording of the diagnosis would have been useful.
  • 70% felt a frequently asked question sheet for patients facing a cancer diagnosis would be beneficial
  • Overall patients wanted more information, better emotional support and shorter time between consultation and confirmation of cancer

37 / Cameron, & Horsburgh. (1998).
USA / To explore issues identified by women with breast cancer to determine if the experiences of women over 60 differed from younger women. / Semi-structured interviews - 20 women /
  • Greater hesitation in seeking initial treatment
  • Strong desire to maintain independence

22 / Cox et al (2006)
UK / 1: To determine the information needs and decision making preferences
2: To record what information they felt they had been given by whom and how helpful they found the information. / Audit. Self-Report questionnaire - either postal or in clinic.
N=394 (233 > 60yrs). Cancer patients male & female (193 breast cancer) Median age 63 across all groups. Range not given /
  • Information and decision making needs - 87% wanted all news good & bad, 9% left it to Dr to decide what to tell them, 3% only wanted good news.
  • Decision making involvement - 2% wanted total responsibility, 20% listen to Dr & then make decision, 39% wanted to share the decision with Dr, 24% wanted to express their opinions but leave it to the Dr to decide, 15% wanted Dr to make decision. Patient over 60 significantly more likely to prefer Dr to take the decision.
  • Patients want more information on emotional wellbeing after treatment.
  • Need to pace information as it changes over the stage of the disease.

8 / Degner et al (1997)
Canada / 1: To determine degree of involvement in decision making & whether this was achieved
2. To determine the priority needs of: types of information and it's level of importance / Cross sectional survey - Self complete questionnaire.
N = 1012 breast cancer patients. 210 ≥ 70 yrs
Median age ~ 58. /
  • Decision making: 22% wanted to select their own treatment, 44% wanted to select treatment with the surgeon.
  • 42% believed they had the amount of control on decision making they wanted.
  • Information needs - 2 most highly ranked were chances of cure and spread of disease.
  • Women ≥50 wanted information on physical & sexual attractiveness.
  • Women ≥70 wanted information on self care.
  • Discussion about treatment options not a priority ranked third overall

57 / Fallowfield, (2008).
World-wide literature / To explore the impact of cancer therapy on the patient, focussing on the importance of effective doctor-patient communication / Scholarly review. /
  • Patients are becoming more adept at retrieving and assimilating information on their disease.
  • Patients are increasingly expecting to play an active role in their care
  • The ability shift to a more collaborative style of consultation is required

25 / Fridfinnsdottir, (1997).
Iceland / To explore the stressors in Icelandic women during the diagnosis phase of breast cancer and what social support they draw on and their satisfaction with those sources. / Semi-structured interviews. N=12 /
  • The possibility of having cancer was seen as an enormous threat
  • Health care professionals were the most important source of information and a valuable source of emotional support.
  • Social support was a fundamental coping resource, with husbands, family and close friends the most important.

14 / Galloway, et al, (1997)
Canada / To develop and test a questionnaire to measure the information needs of women during their first course of breast cancer treatment / Sample 114 women, mean age 53.9 (range 21-91. Structured interviews using the newly developed TINQ-BC questionnaire. /
  • Questionnaire had good content validity including items such as information on the disease, treatments, tests (highest areas), physical care and psychosocial care.
  • Women have high informational needs regardless of their type of treatment
  • Younger women desire more information than older women

45 / Han, et al (2005).
USA / To examine the psychosocial factors related to being pro-active during medical encounters. / This study is part of a multi-centre randomised trial of the effects of group therapy for women with newly confirmed breast cancer N=325.Data are from the baseline data prior to the randomisation. /
  • Problems interacting with physicians and nurses are associated with greater levels of cancer-related traumatic stress, less emotional self-efficacy for cancer, less informational support from family, friends and spouse.
  • Women who were less satisfied with information from family & friends were less satisfied with their physician

20 / Hawkins et al (2008)
USA / 1: To describe the information needs & priorities just after diagnosis.
2: To know the perceived adequacy of information before & after treatment. / Longitudinal data collection, interviews & self complete survey questionnaires across wide variety of cancer patients.
N = 947. (457 breast cancers) Median age 61 yrs. (No range given) /
  • Wanted information about, treatment plan, (8%) treatment effectiveness (31%) relieving side effects (21%), understanding diagnosis (9.5%), disfigurement (50%). Younger expressed more concerns.
  • Older people have less desire for: taking active role in medical care & asking for support services. Information on clinical aspects readily available. Need for social and financial information. Information needs to be tailored to individual. e.g. statistics versus individual risk.

42 / Hughes KK (1993)
USA / 1. To assess the relationship between type & amount of information in decision making, 2. What is the relationship between choice of treatment and recall of information / Telephone interviews.
Convenience sample of patients deciding treatment for early breast cancer.
71 participants. Mean age 49yrs, range 21 - 80 /
  • No relationship between amounts of information received during clinic visit & treatment choice.
  • Treatment selection was related to amount of information prior to clinic visit.
  • Treatment choice unrelated to presentation of information e.g. descriptive or numeric, or whether prognosis expressed negatively or positively framed
  • Recall of informationwaspoor in all areas. This is in a group of middle age people therefore implications for older are significant.

6 / Husain et al (2007)
UK / To explore the views of women treated by either surgery or PET / Semi- structured interviews
21 women >70yrs <15yrs from diagnosis.
Median age 78yrs, range 70-88 /
  • Attitudes to diagnosis were fatalistic.
  • Women relied heavily on medics for direction on treatment choice. Personal experience impacted on attitudes to surgery. No one expressed problems with PET.
  • Age was said not to impact the treatment choice.

13 / Jenkins, Fallowfield, & Saul (2001).
UK / To explore information preferences of patients with cancer. / 2331 patients completed a questionnaire. Age range <30 & >70 /
  • Most patients want as much information as possible about treatment & illness regardless of age.
  • 95% wanted to know what the chances of cure were
  • Older people left the doctor to decide the detail of information given – though they still wanted specific information about treatment & side effects
  • Older may want the doctor to make decisions about management but still require information about the reasons why
  • Women more than men wanted information on all treatment options

15 / Jing-Wen Wong et al (2011)
Canada / To investigate the information needs of women ->70yrs with early breast cancer in relation to adjuvant radiotherapy post lumpectomy / Focus groups & 1 interview.
Patients post completion of radiotherapy.
16 women ≥70 yrs (mean 76yrs: range 70-84) /
  • Information needed on diagnosis, aetiologies, & prognosis, grade of cancers, metastases & survival chances, treatment options & rationale for treatment.
  • Suggested physician should use educational material to explain - e.g. simple
  • Request for clear / straight forward communication of benefits and side effects of treatment
  • Need time to allow for questions.
  • Peer support - highly valued - another patient could provide experiential knowledge and interpret information from HCPs.
  • All placed high value on face-face or telephone with cancer volunteers or friends.
  • Internet use - few used the internet to gain knowledge. Those who did struggled with the volume and knowing how credible the sources were. Some had no internet access and others no desire to use it.
  • Practical issues e.g. parking costs, driving to treatment in the winter were said to create more anxiety than the radiotherapy.
  • The emotional needs of the family - patients giving emotional support to their family rather than the other way created stress. Suggestions that HCP highlight information sources for family.
  • Emotional changes - Giving cancer survivor stories helped cope with illness. Giving booklets would give information but also prompt questions for physician. Needed concise straight forward non-medical text in booklets.
  • Patients’ preference for information is variable some want a lot some are overwhelmed by a lot of

68 / Jones, et al (1999).
UK / To examine the information needs of cancer patients, their satisfaction with the information and the influence of demographic, social & psychological factors. / 525 patients receiving radiotherapy, completed a questionnaire & where interviewed. Data was also extracted form the case notes. /
  • Most wanted as much information as possible
  • 80% were satisfied with the information received.
  • Most also wanted more information on effects of treatment, prognosis and recovery

49 / Lobb et al (2001)
Australia / To determine preference for prognostic information in women with early breast cancer / Cross-sectional Survey. 100 breast cancer patients. Modified Cassileth Information Styles Questionnaire & non-validated questionnaire assessing preference for discussion of the prognosis /
  • 83% wanted as much information as possible
  • 16% wanted limited amounts of information
  • (Both unrelated to age, education, occupation, of time from treatment)
  • 54% wanted collaborative decision-making - these were younger (Mean 52.6)
  • 23% wanted the doctor to make decision - these were predominantly older women (mean 62.2)
  • 23% wanted to make decision themselves
  • Involvement in decision-making was related only to age
  • women who wanted maximum information wanted written / published information

26 / Mendick et al (2011)
UK / 1.To find out what shaped the surgeon's information giving.
2. To examine the convergence and divergence between patient & surgeon's approach and what the patient wanted. / Semi-structured interviews with 20 Breast Cancer patients & 9 Surgeons /
  • Patients wanted routine information e.g. dates of surgery & test results & timetable of events, information to relay to family & friends
  • Suggests patients require information for 'mostly emotional' reasons rather than simply for decision making

66 / Meredith, et al (1996)
UK / To assess the need for information about their condition of patients with cancer / Cross-sectional survey – semi-structured interviews with a questionnaire. N=250 age range, 15-74yrs. /
  • A majority of patients want to know their diagnosis, the chance of cure & side effects of treatment – regardless of age
  • Preferred diagnosis to be given by hospital doctor

41 / Mills & Davidson. (2002) Cancer
UK / To examine information using behaviour among various groups of cancer patients. / Questionnaire survey.
Eligible ≥18yrs. Primary cancer diagnosis including breast.
Sample N=334 (138 breast). 118 >65yrs /
  • Hospital consultant primary source of information
  • GP, Chemotherapy, radiotherapy and ward staff next source
  • Family & friends were a source for 70% and more frequent than hospital written information.
  • Quality of information in order of rating:
  • Macmillan / Specialist nurses considered best
  • Chemotherapy & radiotherapy
  • Consultant
  • Family & friends
  • GPs were rated poorly
  • Poor use of written information by those >65yrs.
  • Older more frequently rated information as excellent or good, wanted someone to answer questions & had a problem dealing with conflicting information

10 / Minstrell et al (2008)
Tasmania / To explore unmet needs for rural women with breast cancer & / Questionnaire survey (SCNS) longitudinal study. N=74 @T1 & 83@T2. Age range 31->71. /
  • Need more information about how to help yourself, benefits and side effects of treatment before choosing treatment & test results
  • Information needs change over treatment pathway - with needs decreasing over time.

19 / O'Leary et al (2007)
World-wide literature. / What are the information needs of early breast cancer patients? / Review paper. Includes studies with women older than 65 years. /
  • Self care more important to older women
  • Older women have fewer information needs passive patients want minimal information
  • Some passive patients want detailed information
  • Most women wanted as much information as possible
  • Older wanted information on social life
  • Seeking a second opinion declined with age
  • Older wanted someone else to make treatment decision
  • Older women less likely to receive written information from sources other than physician or family / friends
  • Internet not extensively used

47 / Pinquart & Duberstein (2004)
World-wide literature / 1. To review the age-differences in patients' need for information about cancer & it's treatment;
2. To examine the preferences for active involvement in treatment decision making, decision making processes;
3. To examine the psychological effects of active collaboration in treatment decision making / Literature review
Inclusion criteria:
At least some patients >60yrs; /
  • Majority of patients want relevant information about their illness and treatment in a language free of medical jargon, & at a speed to allow processing.
  • There are small - moderate differences in information needs Health Care Professionals need to be careful not to stereo-type older people as being passive.
  • Age-difference in information needs will decline when new generation become old.
  • Low preference for active involvement in decision making should be accepted but the opinions sought.
  • Patients should be facilitated to make their values & opinions known even if they don't want to make an active decision about treatment.
  • No age-difference in preference for decision making was found in breast cancer patients who received written or multimedia materials about cancer & therapy before consultation.
  • Decisions will be made easier by non-medical language, pacing the information, repeating important information and helping to structure the decision.

12 / Puts et al (2012)
World-wide literature / To explore the unmet needs of older cancer patients undergoing active cancer treatment and to identify the predictors of unmet need. / Systematic Review. Most studies used Questionnaire surveys.
Only 1 review focused on older people with a variety of cancers. /
  • Most common needs were psychosocial.
  • Information needs were - chances of cure, benefits & side effects of treatment,
  • Younger people have higher unmet needs than older people.
  • Poorer health literacy - cited as a reason for reduced need in older. Cancer & treatment side effects are expected and older people are not familiar with current care interventions.