Who benefits from using internet support groups for those affected by cancer?

1. Who benefits from using internet support groups for those affected by cancer? Dr Henry WW Potts & Professor Amanda J Ramirez {henry.potts, amanda-jane.ramirez}@kcl.ac.uk Cancer Research UK London Psychosocial Group, Guy’s, King’s and St Thomas’ School of Medicine, King’s College, London Cancer type Number of mailing lists specific to cancer type Incidence (US SEER 9 Registry, 1999) Ratio: US cases per no. of lists Incidence in those under 55 (US SEER 9 Registry, 1999) Ratio: US cases under 55 per no. of lists Head & neck 16 5830 360 2380 150 Oesophagus 4 1240 310 200 50 Stomach 0 2110 ∞ 320 ∞ Colo-rectal 9 14330 1590 1970 220 Liver 1 1360 1360 330 330 Pancreas 0 2650 ∞ 320 ∞ Lung 2 15960 7980 1840 920 Sarcoma 5 910 180 470 90 Skin 5 7420note 1 1480 3098note 1 620 Breast 36 23390 650 8320 230 Gynaecological 13 8050 620 3090 240 Prostate 30note 2 18870 630 1550 50 Testis 1 730 730 700 700 Kidney 0 2820 ∞ 670 ∞ Bladder 2 5230 2610 580 290 Brain/CNS 29 1720 60 820 30 Haematological 26 9530 370 2950 110 Other 3 2700 900 700 230 Childhood 11 800 70 800 70 Introduction Internet usage is growing · Over a third of UK homes are connected to the internet and the figure is growing.1 · >100,000 medical websites exist.2 · 85% of UK doctors report some patients experienced health benefits from using the internet, but 44% that some patients experienced health problems.3 · 2001 ONS survey of UK public: 14% gave the internet as somewhere they would go for information on cancer.4 · In two recent surveys of cancer patients, 10% in Northern Ireland5 and 23% in London6 had used the internet. Usage was more frequent among patients who were younger5,6, better educated6 and from a higher social class.6 There were no differences by gender or diagnosis.5,6 The internet was rated as a high quality information source.5 Information and support needs · Most cancer patients want and need high quality information tailored to their situation, yet a lack of information remains a common complaint.7 · Social support reduces risk of psychiatric morbidity.8 · Face-to-face support groups can be useful for those who participate in them.9 · The internet is not only a novel way of accessing static information, but may also provide support for cancer patients through contact with other patients and online communities. What are online communities? · Technologies whereby groups of people can take part in many-to-many communication in a virtual forum or ‘space’. · Online communities defined as (1) people who interact, (2) to a shared purpose, (3) under policies that guide their interaction, (4) using computer systems.10 · Technologies include mailing lists; Usenet & other bulletin boards; chat rooms; Web fora. · Online communities present several possible benefits over traditional support structures. · Cancer-related online communities date back to at least 1992 (alt.support.cancer on Usenet founded). · There is no way of tracking what or how many fora exist. • Method • Yahoo! Groups is a major supplier of mailing lists with 100,000s in operation. A search of Yahoo! Groups using cancer terms and Yahoo!’s own directory as carried out (Mar/Apr 02). Publicly available information about each list at the Yahoo! Groups website was collated. The number of mailing lists specific to each type of cancer was recorded (see Table). This was compared with incidence figures using χ2 and ordinal correlation (Kendall’s τb) as measures of goodness of fit. • Results • We found 1147 English-language mailing lists that cover the experience or treatment of cancer or cancer sequelae. Of these, 308 were active mailing lists that provide support and/or information for those affected by cancer. • Mailing lists cover a huge breadth and depth of patient types. There are lists pertaining to: • 58 different cancer types, including very rare cancers: e.g. tongue carcinoma, Ewing’s sarcoma, optic glioma • Various sequelae: e.g. pain, lymphoedema, cerebellar mutism • Specific treatments: e.g. Temozolomide, Gleevec • Religious groups: Christian, Muslim • Other very specific groups: e.g. lesbians with breast cancer, war veterans with prostate cancer • Profile by cancer type • ·      We would expect more mailing lists to exist for cancers with greater incidence, but there is only a weak relationship (correlation across cancer types, τb = 0.43). • ·      There are more mailing lists, and more subscribers to those lists, pertaining to thyroid, brain/CNS and haematological cancers and fewer to lung cancer than expected when compared to incidence (based on χ2 components >10). • ·      There is some suggestion that the number of mailing lists is greater for cancer types with a younger age profile. The number of mailing lists shows a stronger correlation with incidence in the under-55s (τb = 0.60). This presumably reflects that internet users tend to be younger. • Conclusions and future research • ·       A huge variety of mailing lists exist allowing individuals to communicate • with others in similar circumstances. • ·       Why do some comparatively rare cancers engender more online activity? Age may be an explanatory factor. • ·       Next steps: questionnaire surveys of mailing list users to analyse the benefits (and drawbacks) of online communities. • References • BBC News (2001). UK internet use growing. BBC News: Business. URL: <http://news.bbc.co.uk/1/hi/business/1292844.stm> Accessed 28 Oct 2002 • Eysenbach G, Sa RE, Diepgen TL (1999). Shopping around the internet today and tomorrow: towards the millennium of cybermedicine. British Medical Journal, 319, 1294 • Potts HWW, Wyatt JC (2002). Online survey of doctors’ experience of patients using the internet. Journal of Medical Internet Research, 4, e5 • K McCaffrey & J Wardle, pers. comm. • Mills ME, Davidson R (2002). Cancer patients’ sources of information: use and quality issues. Psycho-Oncology, 11, 371-8 • D Wilkins, pers. comm. • Meredith C, Symonds P, Webster L et al. (1996). Information needs of cancer patients in west Scotland: cross sectional survey of patients’ views. British Medical Journal, 313, 724-6 • Pinder KL, Ramirez AJ, Richards MA, Gregory WM (1994). Cognitive responses and psychiatric disorder in women with operable breast cancer. Psycho-Oncology, 3, 129-37. • Fitch M (2000). Supportive care for cancer patients. Hospital Quarterly, 3, 39-46 • Preece J (2000). Online Communities: Designing Usability, Supporting Sociability. Chichester: John Wiley. A screen shot of a Yahoo! Groups mailing list: colon_cancer_support A comparison of the number of mailing lists to incidence figures by cancer type. Aims · To examine the profile of cancer-related internet support groups. · To determine whether the extent of online activity pertaining to different cancer types is related to incidence figures or whether certain cancer types are comparatively over- or underrepresented online. · To assess the potential for future research in this area. [1] Basal and squamous cancers not recorded. [2] Most of the mailing lists for prostate cancer are part of an interrelated set in which people are expected to be on several different mailing lists, exaggerating the apparent amount of activity. The number of mailing lists specific to each cancer type was compared to the incidence of that cancer type. The internet is international in usage, but English-speaking users are predominantly from the US, so US incidence figures are used (SEER Registry 9, 1999 results). The table given is a summary of more detailed results. The ratios illustrate how the number of mailing lists is only approximately related to the frequency with which that cancer type occurs. For example, lung cancer is very common, but only two mailing lists specific to lung cancer were found, whereas 29 mailing lists pertaining to brain/CNS tumours were found despite brain/CNS cancers being comparatively uncommon. The ratios with incidence in the under-55s are somewhat more consistent, illustrating a better fit to the number of mailing lists.