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Patients completed measures about lifestyle changes after diagnosis (diet, exercise,

smoking, alcohol consumption), and both groups responded on their information needs

and the time when each need was developed, information-seeking behaviour

(satisfaction, need, intention), control and perceived causes of cancer. Demographic

information (i.e. education, gender) was also assessed as well as their involvement in

food shopping and food preparation. Patients provided their medical information

(Gleason Score, age of diagnosis, medical treatment and treatment phase) as well. Each

measure is outlined below (Table 4.1).

Table 4.1: Measures included in the study

Measures used Number

of items Reference Group that completed

Demographic information 5 New Patients, Significant others

Medical Information 4 New Patients

Involvement in food shopping 1 New (based in some previous studies i.e.

Lifestyle change after diagnosis 4 Rabin and Pinto (2006) Patients

Information needs 11 Rutten et al. (2005) Patients, Significant others Time of information need

development 11 New, based on Rutten et

al. (2005) Patients, Significant others Information-seeking behaviour

(satisfaction, need, intention)

3 Noh et al. (2009) Patients

Control 1 New Patients

Perceived cause of cancer 12 Sanderson et al. (2008) Patients

“Demographic and medical information”

All participants were asked to provide details on their age, gender, and marital status (married/living as married, living with another adult(s), single/living alone), level of education (6 choices ranging from “no formal schooling” to “postgraduate degree completed”) and their employment status (full time, part time, retired/not working).

Those participants who were diagnosed with prostate cancer were also asked to provide

medical information on their Gleason Score, their treatment status (under treatment, in

complete remission and recurrent), the age at which they were diagnosed with prostate

cancer and the treatments they had undergone (surgery, radiation therapy, chemotherapy

or other).

“Involvement in food shopping and food preparation”

Participants’ involvement in food preparation (“What is your involvement in food preparation in your household”) was assessed with participants asked to tick a box to the following statements: “no involvement”, “prepare snacks/drinks occasionally”, “prepare snacks/drinks daily”, “prepare or help prepare meals occasionally”, “prepare or help prepare meals daily”, and “prepare or help prepare all snacks/drinks and meals”.

Participants’ involvement in food shopping was assessed (“What is your involvement in food shopping”) with participants asked to tick a box to the following statements: “no involvement”, “discuss with spouse/companion what to buy”, “accompany spouse/companion when food shopping”, do food shopping by self”.

“Lifestyle changes after diagnosis”

The questions related to lifestyle changes after diagnosis in this study were previously used by Rabin and Pinto (2006). In that study, they investigated the relationship between modifiable risk factors and cancer-related beliefs. The lifestyle changes after diagnoses used in the current study were: diet (eating a healthier diet), exercise (increased my level of exercise), alcohol consumption (drink less alcohol) and smoking (have cut down/quit smoking). Participants were asked to rate their response retrospectively (“Since diagnosis I…”) in a 5-point Liker Scale ranging from “strongly agree” to “strongly disagree” on the four lifestyle changes.

“Information needs”

The responses to the question on participants’ information needs are based on a systematic review (Rutten et al., 2005), which identified a typology of cancer patients’

information needs based on the relevant literature. They created a set of categories for

information needs. One information need from each category has been included (the one

with the highest rating - % found in the literature) while also adding an extra item (“diet

and nutrition”). The 11 categories were: “available treatments/treatment options”,

“more information about prostate cancer”, “likely progress of disease”, “self-care issues or home care during delivery”, “effects on family, friends and caregivers, “emotional reactions, emotional support, coping with cancer”, “interaction issues with health care providers”, “sexuality”, “cost of treatment, insurance coverage or other financial issues”,

“diet and nutrition” and “maintaining psychological health” with the added “diet and nutrition”. For each of the 11 needs, participants who were diagnosed with prostate cancer were asked “To what extent were you interested in getting information in relation to the following after being diagnosed” and the question was modified for significant others to “…after the person you are significantly linked with was diagnosed”.

Participants were asked to respond on a 5-point Liker Scale ranging from “not at all interested” to “extremely interested”.

The items were also computed into new variables based on a systematic review (Rutten et al., 2005) along with the researcher’s understanding of the items. Specifically, the new variables were: treatment-specific (“available treatments-treatment options”, “self-care issues or home care during recovery”, “cost of treatment, insurance coverage and other financial issues”), disease-specific (“likely progress of disease” and “more information about prostate cancer”), interaction-specific (“effect on family, friends or caregivers”

and “interaction issues with health care providers”), emotional health-specific (“emotional reactions, emotional support, coping with cancer” and “maintaining psychological health”) and lifestyle-specific or physical health-specific (“sexuality” and

“diet and nutrition”).

“Time of information need development”

Participants were asked to give information on how soon after diagnosisthey developed an interest in each of the 11 items. Responses were “immediately”, “less than 1 month”,

“1-3 months”, “4-6 months” and “more than 6 months”. Significant others were asked

how soon after the person they were significantly linked with was diagnosed with, they

“Information-seeking behaviour”

For this study some items were used from Noh et al.’s (2009) study in order to investigate participants’ satisfaction (“I am satisfied with the information received about prostate cancer”), need at the time of diagnosis (“I had a need for information about prostate cancer”) and intention to seek information (“I had the intention of seeking cancer information”). Participants were asked to rate these three items on a 5-point Liker Scale ranging from “strongly agree” to “strongly disagree”.

“Perceived cause of cancer “

For this variable, 12 of the 29 pre-defined categories about cancer that were used in another study (Sanderson et al., 2008) were included in this study. These items were associated with lifestyle changes compared with the rest of the 29 categories in the study, and included “having a weakened or impaired immune system”, “diet in general”,

“smoking” and “genetics” etc. Patients were asked to rate how much they considered each item to be associated with their diagnosis on a 5-point Liker scale ranging from

“not at all” to “extremely”.

“Control”

An item was used measuring the level of control of participants. They were asked to rate

how much they agreed with the statement “By living healthily I can influence the course

of my cancer” on a 5-point Liker scale ranging from “strongly agree” to “strongly

disagree”.