Family and family support

The few studies that include family/partner motivations highlight the need to reduce a loved one’s stress and anxiety, the need to get information to help a loved one support decisions and for them to be directly involved in the decision-making.^{Reference Mason8,Reference D’Alimonte, Hahn, Makhani, Adams and Szumacher9} The challenge to healthcare providers in assessing and satisfying family/partner information needs is that they are not always present during consultations.^{Reference Mason8} Second, hospital consultations and appointments in general are time-limited engagements with the priority of the healthcare provider focused primarily on the needs of the patient. Information needs for families are not easily addressed, although the establishment of information and support radiographers in many radiotherapy departments makes great strides towards meeting the need. Additional signposting to support networks and charities is also crucial in this respect.

Family and home circumstances have also been controversially argued to impact on how much information patients require. Patients living without a partner/spouse having significantly greater information needs.^{Reference Bergenmar, Johansson and Sharp5} This result somewhat disagrees with other studies which show that patients who had a significant relationship (partner or spouse) had higher informational needs due to the motivational influence of their responsibility for others.^{Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11} Mason^{Reference Mason8} acknowledged the benefits of including a patient’s family/spouse during information-giving sessions; she found that this reduced the time needed to educate patients. Including a patient’s family is not without its disadvantages as patients may at times put up a ‘façade’ intended to mask a genuine need for support.^{Reference Pedersen, Koktved and Nielsen12} Particularly when in the company of their loved ones, the patient attempts to downplay their own needs in order to protect partners and family.

Timing

Few researchers have been able to specify the optimum time to provide cancer patients with information. There are many studies debating patient satisfaction rates in relation to information received at different times during the treatment journey.^{Reference Taylor4,Reference Mason8,Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11–Reference Wolpin, Parks, Galligan, Russell and Berry16} None has given rise to a definitive approach with many radiotherapy departments providing patient information at different stages of the cancer care pathway.^{Reference Sutherland and McLaughlan17} Studies have attempted to assess the effectiveness of information given to patients prior to beginning radiotherapy.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13,Reference Wolpin, Parks, Galligan, Russell and Berry16} Some report that patients have a greater appetite for information at this time and that overall, patients prefer to receive information prior to treatment commencing.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13} However, the literature is not consistent, and evidence within a large questionnaire study of patient expectations for information, concluded that in addition to information prior to treatment patients needed information during and throughout the course of treatment.^{Reference Siekkinen, Salantera, Rankinen, Pyrhoenen and Leino-Kilpi15} Further studies showed patients had active information-seeking behaviours after the completion of a treatment course. This behaviour was noted to be at odds to that witnessed in the same patients prior to treatment.^{Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11} Harrison et al.^{Reference Harrison, Galloway, Graydon, Palmer-Wickham and Rich-van der Bij14} reported that women receiving breast cancer treatment showed no change in information needs over the course of treatment and follow-up. The authors in the study accepted that this finding may be unreliable as a result of premature follow-up of the women immediately after the treatment ended rather than after an acceptable time period.^{Reference Harrison, Galloway, Graydon, Palmer-Wickham and Rich-van der Bij14} Many experts are now satisfied that patient preferences for information and information-seeking styles often change over time.^{Reference Taylor4,Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11,Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13–Reference Sutherland and McLaughlan17} Hence, the overwhelming need for patients to have their information needs assessed frequently and for information to be personally tailored and provided throughout the treatment course.^{Reference Taylor4,Reference Harrison, Galloway, Graydon, Palmer-Wickham and Rich-van der Bij14} The hypothesis that a patient’s information needs will change with time emphasises the need for a dynamic approach rather than a one time is best approach. There may also be merit in revisiting and repeating information provision at differing time points in order to enhance the effectiveness of understanding.

Rapport

The perception and development of the key relationships between health professionals and patients is greatly influenced by the time spent together.^{Reference Bergenmar, Johansson and Sharp5,Reference Orellana-Rios, Radbruch, Kern, Regel, Anton and Sinclair7,Reference D’Alimonte, Hahn, Makhani, Adams and Szumacher9,Reference Bolderston18} In recent years, the duration of patient appointments has greatly reduced impacting on the amount of time healthcare professionals have to spend with patients.^{Reference Mason8,Reference Pedersen, Koktved and Nielsen12} If the time is not sufficient, the health professional and patient relationship can be negatively impacted.^{Reference Pedersen, Koktved and Nielsen12} The result of an unestablished trusting relationship with healthcare professionals can result in patients displaying a ‘façade’ when asked about their informational needs.^{Reference Pedersen, Koktved and Nielsen12} Furthermore, due to staff rotation, multiple staff members may be involved in any one patient’s treatment. This can ultimately lead to a lack of continuity in care and can further worsen the patient’s perception of the information received.^{Reference Mason8,Reference Pedersen, Koktved and Nielsen12} The extent to which patients accept unmet informational needs within a failing healthcare system was demonstrated within a small study of patients; ‘I had no perception of them as advisors [and therefore I did not ask questions]’.^{Reference Pedersen, Koktved and Nielsen12} Another striking insight into patient perception was revealed when information was given while staff completed other tasks; the information was seen as ‘random’.^{Reference Pedersen, Koktved and Nielsen12} A striking finding from the studies showed that patient preference for information and information-seeking styles is influenced by individual characteristics and demographics such as, age, gender, socio-economic status and educational achievement.^{Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11} For information provision to be effective, the establishment of trust and a good rapport with the patient appears vital.

Information format

A unique study by Häggmark et al.^{Reference Häggmark, Bohman, Ilmoni-Brandt, Näslund, Sjödén and Nilsson19} looked at the effects of the format of information being given. They compared three methods of providing information to patients: standard information with a brochure, standard information only and standard information with repeated individual information. The results were that the patients who received standard information with repeated individual information were significantly more satisfied with all aspects of the information in comparison to the other two groups. This result substantiates previous thinking that providing information to cancer patients is a continuous process. A patient’s ability to recall and understand information can also impact their perception of information received, especially if information has been delivered in a single episode. Despite the positive results shown by patients who preferred repeated individualised information, the authors of this study made no changes to clinical practice due to the increased expense associated with this approach to information provision.^{Reference Häggmark, Bohman, Ilmoni-Brandt, Näslund, Sjödén and Nilsson19}

With National Health Service (NHS) hospitals becoming increasingly busier, the demand for specialist supportive charities has increased. In a recent study, a prostate cancer charity revealed the reasons behind the popularity of a telephone information hotline; patients benefit by receiving uninterrupted time, complete confidentiality and access to specialist nurses. Furthermore, families of men with prostate cancer can also receive support via the telephone. The option of emailing questions to specialist charity nurses has also proven popular.^{Reference Lynch20}

The modern world of technology has also witnessed patients, and their families utilise the Internet as a cancer information source.^{Reference Simon, Ragas, Nonzee, Phisuthikul, Luu and Dong6,Reference Pedersen, Koktved and Nielsen12} Similar to the benefits of a telephone hotline, online support has been described as convenient and an easy method of sourcing information.^{Reference Pedersen, Koktved and Nielsen12} One study revealed that cancer patients went online to source bio physiological information. Furthermore, younger, well-educated patients expected more bio physiological information from the Internet than other users.^{Reference Siekkinen, Salantera, Rankinen, Pyrhoenen and Leino-Kilpi15} Other authors have supported this claim that younger patients are more active online than older patients at sourcing information outside the hospital setting.^{Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11,Reference Jahraus, Sokolosky, Thurston and Guo21}

These findings are supported as experts have shown that older patients with breast cancer placed more value on face-to-face or telephone conversations with peers or other patients as opposed to seeking information online. Those older patients that did go online for information explained the challenges of filtering information and examining the reliability of information.^{Reference Wong, D’Alimonte, Angus, Paszat, Soren and Szumacher22} Interestingly Jahraus et al.^{Reference Jahraus, Sokolosky, Thurston and Guo21} highlighted the great benefit of the Internet use for patients who have an unquenchable need for information. This theory could be utilised in clinical practice as a means to satisfy patient informational needs while in a time-restrictive environment. Authors have also acknowledged a fundamental issue that while the past decade has witnessed more people ‘surfing the web’ not everyone has access to the Internet and is proficient in its use.^{Reference Jahraus, Sokolosky, Thurston and Guo21–Reference Grinyer23}

Sherman et al.^{Reference Sherman and Koelmeyer24} accept the valued role of external sources of information like the Internet, but their study suggested that those utilising the Internet were reluctant to trust sources outside their healthcare provider’s advice. They demonstrated that information provided in a brochure format and from a clinic staff member played a leading role in convincing a patient group to comply with risk minimisation behaviours in comparison to other information sources. This view is validated by Wiljer et al.^{Reference Wiljer, Walton, Gilbert, Boucher, Ellis and Schiff25} agreeing that while patients actively sought information outside the clinical setting patients rated the members of the healthcare team as the best source of information.

For patients who have unmet informational needs, using the Internet may have negative consequences and inherent risk. A patient who shared their Internet experience with Pedersen et al.^{Reference Pedersen, Koktved and Nielsen12} described the feeling of ‘self-blame’ after following online advice that could have had a potential detrimental effect on their cancer treatment. Experts agree that health professionals have a responsibility to support patients regarding the appropriateness of information searched online.^{Reference Taylor4,Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11,Reference Grinyer23}

A unique pilot study by Sule-Suso and colleagues^{Reference Sule-Suso, Finney, Bisson, Hammersley, Jassel and Knight26} provided radiotherapy information using a virtual reality system. Using such unique software, patients and their families were shown graphically the equipment involved in treatment, the treatment environment and the critical importance of patient compliance to reproducibility and reduce side effects. The results of this pilot demonstrated that patients had a better understanding of their treatment and the linked side effects. The unique factor of this study was the inclusion of families and partners with many reporting feeling more involved.^{Reference Sule-Suso, Finney, Bisson, Hammersley, Jassel and Knight26} The main limitation of the study was the cost of the initial purchasing of the Virtual Environment for Radiotherapy Training (VERT) system and the time factor for staff to provide demonstrations to patients on a one-to-one basis. There was a small majority of patients who opted out of this study explaining that they had already been fully informed and other families’ members and partners declined the invitation as they felt they had received sufficient information.^{Reference Sule-Suso, Finney, Bisson, Hammersley, Jassel and Knight26}

Information content

The greater focus of literature within this review addresses the preferred subject and content of patient information.^{Reference Taylor4,Reference Mason8,Reference Hetz and Tomasone10,Reference Pedersen, Koktved and Nielsen12,Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13,Reference Siekkinen, Salantera, Rankinen, Pyrhoenen and Leino-Kilpi15,Reference Bolderston18,Reference Lynch20,Reference Wong, D’Alimonte, Angus, Paszat, Soren and Szumacher22,Reference Morley, McAndrew, Tse, Rakaric, Cummings and Cashell27–Reference Sherminie and Cottrell31} Information regarding cancer treatment side effects is a common area where patients felt that information was lacking particularly amongst NHS care providers.^{Reference Taylor4,Reference Pedersen, Koktved and Nielsen12,Reference Lynch20} This finding is supported by a research charity who recorded the subject of telephone calls received annually reporting treatment side effects as the most frequent subject area.^{Reference Lynch20} A small study examining patient preference for information surrounding late effects found that nearly half of the participants would have liked more information and none of the patients wanted less.^{Reference Taylor4} Providing patients with information regarding treatment side effects was linked very strongly to patient satisfaction and the benefit of engaging patients in treatment decision-making.^{Reference Wong, D’Alimonte, Angus, Paszat, Soren and Szumacher22} Healthcare providers have a duty of care and are legally and ethically obligated to ensure valid informed consent is obtained.^{Reference Faden and Beauchamp2} In order for patients to be active in treatment decision-making processes, they must be provided with sufficient information including treatment side effects.^{Reference Faden and Beauchamp2,Reference Taylor4,Reference D’Alimonte, Hahn, Makhani, Adams and Szumacher9}

Less information and knowledge gaps

Within the literature, there was limited research discussing circumstances where patients preferred less information or deemed information as invalid.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13} This may be a minority group but one that should not be ignored. Further research is needed in order to evaluate the needs of this sub-group of patients in order for their preferences to be better understood and respected.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13} A study focusing on patients starting radiotherapy treatment found that information regarding complementary therapies, other patients’ experiences and what patient support organisations offer were topics patients least wanted to be fully informed about.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13} The findings contradict other valid studies where the cancer patient’s preference was to receive information about other patients’ experiences.^{Reference Lynch20} One of the assessments that nurses working in cancer charity organisations carry out routinely, is the service users need for peer support. It is felt that peer support can be valuable with users appreciating hearing the personal experiences of others.^{Reference Lynch20} Another study found peer support to better prepare patients for treatment and its implications, it allowed participants to personalise information conveyed by health providers.^{Reference Wong, D’Alimonte, Angus, Paszat, Soren and Szumacher22} A justification of the isolated finding that patients may have a lower preference for information regarding other patients’ experiences could be related to Maslow’s hierarchy of needs theory.^{Reference Cleary, Hegarty and McCarthy29} Patients who had a lower preference for information about other patients’ experiences were by definition ‘new radiotherapy patients.’ Starting radiotherapy can be a daunting experience, and many are still coping with the impact of a cancer diagnosis. It is therefore not surprising that patients in this stage of the journey are more focused on satisfying their own basic needs for safety and understanding of radiotherapy treatment rather than psychological needs of support. This theory is supported by findings from studies of women with gynaecological cancers and information needs during diagnosis versus needs during rehabilitation and survivorship phases. During the cancer diagnosis phase issues and information regarding sexuality were not as prominent compared to women who had completed treatment.^{Reference Senn, Mueller, Hasenburg, Blankenstein, Kammermann and Hartmann28,Reference D’Alimonte, Ackerman, Barbera, Barnes, Thomas and Di Prospero32} Sadly, within the literature patients reported unmet information needs regarding sexual health.^{Reference Taylor4,Reference Mason8,Reference Senn, Mueller, Hasenburg, Blankenstein, Kammermann and Hartmann28,Reference Cleary, Hegarty and McCarthy29} The issues around sexual health is not only important for the patient but also significant for partners and spouses.^{Reference Mason8} When sexual health is examined holistically, outside the act of intercourse alone, not having sufficient information to maintain closeness and a level of intimacy can greatly impact a partner or spouse ability to provide emotional support to a person with a cancer diagnosis.^{Reference Mason8} Within the literature, few researchers have addressed sexual health information and provision of sexual health information or training among service providers.^{Reference Taylor4,Reference Lynch20,Reference Galloway, Graydon, Harrison, Evans-Boyden, Palmer-Wickham and Burlein-Hall33} The challenge for therapeutic radiographers is to accurately gauge and identify what stage of the patient journey the patient is in and tailor information needs accordingly. This will not be easy as it will not be the same for every patient.

Cancer diagnosis and site-specific challenges

Some of the research regarding patient information needs is focused on site-specific cancers and their comparison with other cancer sites. Cleary et al.^{Reference Cleary, Hegarty and McCarthy29} describe how patients with gynaecological cancers have higher unmet information needs as a result of patient embarrassment and lack of knowledge with inadequately trained staff and limited resources compounding the issue. The finding of the study is echoed by D’Alimonte et al.^{Reference D’Alimonte, Ackerman, Barbera, Barnes, Thomas and Di Prospero32} describing the ‘unique’ informational needs of women with gynaecological cancers. Many of the studies surrounding gynaecological cancers and the psychosexual needs of these patients discuss the limited qualitative literature and patient information available.^{Reference Cleary, Hegarty and McCarthy29,Reference D’Alimonte, Ackerman, Barbera, Barnes, Thomas and Di Prospero32}

A cross-sectional study comparing information needs between malignancies found that patients with advanced melanoma have greater information-seeking needs compared to other cancer sites.^{Reference Di Rocco30} Hertz et al.^{Reference Hetz and Tomasone10} study focusing on supportive needs of melanoma patients highlighted the contrast between the greater resources available for melanoma patients with that available for other malignancies.

Another cross-sectional study revealed that lung cancer patients rated information and emotional needs as most important.^{Reference Wiljer, Walton, Gilbert, Boucher, Ellis and Schiff25} Interestingly, for the majority of patients included within the study, these needs were most important during the pre-diagnosis stage. Previous literature supports the finding within this study that lung cancer patients feel anxious during the pre-diagnosis phase.^{Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11} Commonly complex symptoms and poor prognosis characteristics of lung cancer lead to high levels of anxiety resulting in greater information needs at the pre-diagnosis phase.^{Reference Wiljer, Walton, Gilbert, Boucher, Ellis and Schiff25,Reference Douma, Koning, Zandbelt, de Haes and Smets34} This finding is well founded with studies showing that lung cancer patients seek information more actively in the pre-treatment phase than at any other time. In comparison to other cancer site groups, lung cancer patients were found to be more passive in their information-seeking behaviours in the post-treatment phase. Eheman et al.^{Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11} reported within their longitudinal study comparing information-seeking styles among different cancer patient groups and during different phases of treatment found lung cancer patients to be more passive overall in their information-seeking styles.

There is, however, ambiguity surrounding lung cancer patients needs as the study by Douma et al.^{Reference Douma, Koning, Zandbelt, de Haes and Smets34} found that this group of patients were associated with lower information needs despite having higher anxiety traits in comparison with other malignancies. Zeguers et al.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13} revisits this finding claiming that lung cancer patients who are often older males with higher anxiety levels need less information. Specifically, within this study, lung cancer patients reported lower information needs surrounding prognosis. This has been based on the assumption that patients wanted to know less information when the content is perceived as negative.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13} An alternative hypothesis might be that patients with lung cancer are often smokers/ex-smokers and the influence of feeling guilt and embarrassment impacts the information-seeking behaviours. Patients believe that they do not deserve to know – further research is warranted to clarify why this patient group demonstrates low information needs.

Rectal cancer patients were found to be similar to lung cancer patients in that they require less information than other malignancies, particularly if they are male, older and more anxious.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13,Reference Douma, Koning, Zandbelt, de Haes and Smets34} They were also found to have lower information needs regarding treatment itself. The theory that the influence of embarrassment may result in lower information-seeking behaviours is similar to that experienced among patients with gynaecological cancers.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13}

Prognosis

Patient preference and need for information regarding prognosis remains a subject for debate. Historically, patients struggle to receive information regarding prognosis and professionals can feel that pressing the subject can be stressful and detrimental for the patient.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13} The majority of studies, however, showed a high demand for prognosis information.^{Reference Hetz and Tomasone10,Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13,Reference Siekkinen, Salantera, Rankinen, Pyrhoenen and Leino-Kilpi15,Reference Wolpin, Parks, Galligan, Russell and Berry16,Reference Wong, D’Alimonte, Angus, Paszat, Soren and Szumacher22,Reference Di Rocco30,Reference Bakker, Weug, Crommelin and Lybeert35} While one large study highlighted that new cancer patients in general preferred extensive information regarding prognosis, the lung cancer patient sub-group reported lower prognosis information needs than the other cancer sites.^{Reference Zeguers, de Haes, Zandbelt, Ter Hoeven, Franssen and Geijsen13}

Other factors

Other factors that have been thought to influence information needs and information-seeking behaviours are age, culture, socio-economic status and education standard. A number of studies have examined the impact of age and found that older patients (51–60 years) required less bio physiological knowledge than younger groups although the older patients did seek more social knowledge than their counterparts.^{Reference Siekkinen, Salantera, Rankinen, Pyrhoenen and Leino-Kilpi15} Bergenmar et al.^{Reference Bergenmar, Johansson and Sharp5} revealed that age was also a significant factor when examining how satisfied patients were with the information that they received from healthcare providers. Younger patients reported to be less satisfied with the information received with the majority of patients studied seeking more information.^{Reference Bergenmar, Johansson and Sharp5,Reference Galloway, Graydon, Harrison, Evans-Boyden, Palmer-Wickham and Burlein-Hall33} A study by Eheman et al.^{Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11} also supported this finding that the older generation patients (65 and older age group) were more passive in their information-seeking styles than younger patients (20–64 age group).^{Reference Eheman, Berkowitz, Lee, Mohile, Purnell and Marie Rodriguez11} That said, Wong et al.^{Reference Wong, D’Alimonte, Angus, Paszat, Soren and Szumacher22} argued that age alone cannot determine the level of information need. Within their study, they specifically looked at elderly breast cancer patients and pointed out that although they were satisfied with medical information, they were unsatisfied with the format and type of information given.^{Reference Wong, D’Alimonte, Angus, Paszat, Soren and Szumacher22} The finding highlighted that age alone cannot be relied upon as a predictive quantifier for information provision.^{Reference Orellana-Rios, Radbruch, Kern, Regel, Anton and Sinclair7,Reference Güleser, Taşci and Kaplan36}